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Full text of "Final report : state-administered programs for HIV-related care"

50272-101 

^^^^^^WUMENTATION 1. Report No. 

PAGE 

^S,r;dmSred programs for H,V-Re,a.ed Care 



7. Author(s) Robert J. Buchanan 



'oe7arerXrS^^^^^^^^^^^ 
Harborview Office Tower, Suite 408 
19 Hagood Road 

Medical University of South Carolina 
Charleston, SC 29425 

12 Sponsoring Organization Name and Address 

Health Care Financing Administration 
Office of Strategic Planning 
7500 Security Blvd., Mail Stop 
Baltimore, MP 21244-1850 



2. 



3. Recipient's Accession No 

5. Report date 
December 1997 (date of 
preparation) 



8. Performing Organization Rept. No. 



10. Projectrrask/Worl< Unit No 

HCFA18-P-90286/5-02 



11. Contract (C ) or grant (G) No 
(C) 

(G)HCFA 18-P-90286/5-02 



13. Type of report & Period Covered 

Final Report, 1994-1997 

14. Performing Organization Code 



IS.Supplementary Notes 

services. 



17 Documents Analysis a. Descriptors 

,ae„«ne^Open En-ed Te™, Acquired ,™une Decency, Medicar. Medicaids R,an 



c. CO SATI Field/Group 

18. Availability Statement 
NTIS Release Unlimited 



19. Security Class (This report) 

Unclassified 

20. Security Class (This Page) 
Unclassified 



21. No of pages 



22. Price 



OPTIONAL FORM 272 (4-77) 
(FORMERLY NTiS-35) 
Department of Commerce 



I 



FINAL REPORT: 

State-Administered Programs for HiV-Reiated Care 
(Grant # 18-P-90286/5-02) 



Funded by: 
Health Care Rnancing Administration 
Department of Health and Human Services 



Robert J. Buchanan, Ph.D. 
Principal Investigator 
Department of Health Administration and Policy 
Harborview Office Tower, Suite 408 

19 Hagood Road 
Medical University of South Carolina 
Charleston, SC 29425 
(803) 792-3496 



December, 1997 



TABLE OF CONTENTS 



ABSTRACT 

EXECUTIVE SUMMARY 
Chapter 1 : 



Chapter 2: 
Chapter 3: 
Chapter 4: 
Chapter 5: 
Chapter 6: 
Chapter 7: 
Chapter 8: 
Chapter 9: 
Chapter 10: 



The Ryan White CARE Act: The Allocation of Title II 
Funding Among Programs by the States 

Consortia Services Funded by Title II of the 
Ryan White CARE Act 

Drug Assistance Programs Funded by Title II of the 
Ryan White CARE Act 

Home and Community-Based Care Funded by Title II of 
the Ryan White CARE Act 

Health Insurance Continuation Programs Funded by 
Title II of the Ryan White CARE Act 

The Medicaid Home and Community-Based Care Waiver 
Programs: Providing Services to People with AIDS 

State-Funded Medical Assistance Programs: Sources of 
Health Coverage for People with HIV Illness 

Assessments of the Coverage of HIV-Related Care by Public 
Programs: A Survey of AIDS Service Organizations 

Compliance with TB Drug Regimens: Incentives and 
Enablers Offered by Public Health Departments 

Tuberculosis and HIV Infection: Utilization of 
Public Programs to Fund Treatment Services 



Chapter 1 1 : Summary and Conclusions 

Acknowledgments 

Appendix 1 : List of Publications Resulting from the Study 



Appendix 2: 



Expenditures for Sen/ices Provided to Waiver Recipients 
with the AIDS-Specific, Home and Community-Based Waivers 



10 

39 

67 

92 

108 

127 

144 

172 

179 
205 
220 
221 

222 



ABSTRACT: 

STATE-ADMINISTERED PROGRAMS FOR HIV-RELATED CARE 

Objectives 

The objectives of this study are to describe and analyze a range of state- 
administered, government programs available to cover and finance the health care 
needed by people infected with the human immunodeficiency virus (HIV). The study 
focuses on: Title II programs of the Ryan White CARE Act; Medicaid 2176 home and 
community-based care waiver programs; state-funded, non-Medicaid, medical 
assistance programs; and the actions of state health departments that address the 
incidence of tuberculosis, especially among people with HIV illness. The research also 
presents assessments that administrators of AIDS service organizations at the state 
and local level have about how well each of these state-administered public programs 
(as well as the federal Medicare program) addresses the health care needs of people 
with HIV in their states. The project collected data on these state-administered public 
programs with a series of nine separate surveys that were mailed to program 
administrators in each state. Successful innovations developed by individual states 
that implement a comprehensive range of state-administered programs can serve as 
models to guide other states in developing AIDS-related policies that assure that all 
people with HIV have access to necessary health and care-related services. 



1 



EXECUTIVE SUMMARY 
Objectives 

The objectives of this study are to describe and analyze a range of state- 
administered, government programs available to cover and finance the health care 
needed by people who are infected with the human immunodeficiency virus (HIV). 
The study focuses on: Title II programs of the Ryan White CARE Act; Medicaid 2176 
home and community-based care waivers; state-funded, non-Medicaid, medical 
assistance programs (MAP); and the actions of state health departments that address 
the incidence of tuberculosis (TB), especially among people with HIV illness. The 
research also presents assessments that administrators of AIDS service organizations 
(ASOs) at the state and local level have about how well each of these state- 
administered public programs (as well as the federal Medicare program) addresses 
the health care needs of people with HIV in their states. 

Survey Results 

The project collected data on these state-administered public programs with a 
series of nine separate surveys that were mailed to program administrators in each 
state during 1995 through 1997. These surveys of the administrators of the various 
state-administered public programs identify states that have developed innovative 
policies to assist people with HIV gain access to needed health services. These 
innovative policies can then be used as models to assist other states in the 
development of similar AIDS-related policies for their states. 
Title II Programs 

The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act 
became law in August, 1990 with the objective to improve both the quality and 

ii 



availability of care for people with HIV disease and their families. Title 11 of the CARE 
Act allows states to allocate funds among any or all of four areas: to cover home- 
based health services; to provide medication and other treatments; to continue private 
health insurance coverage; or to fund HIV care consortia. 

Title II Funding Allocations. The study presents how the states are allocating 
Title 11 funds, with most states spending the largest share of Title II funds on HIV 
consortia.* Among the programs and services that Title II administrators considered 
to be most effective at meeting the care needs of people living with HIV are: the HIV 
consortia; the HIV/AIDS DAPs; case management; and various home health services. 
The Title II administrators in most states expect the number of Title II beneficiaries to 
increase. If federal funding for Title II programs does not increase to keep pace with 
the increasing number of people expected to receive Title II benefits, then the Title II 
programs may not be able to provide services for all eligible people. 

Consortia. The study identified a range of medical and support services that 
the HIV consortia funded by Title II provided during 1995 in the various states. Among 
the most effective consortia services identified by the study are: case management, 
primary medical care, drugs/medication, dental care, and home care. However, as 
the response from a Title II administrator in Florida summarized: "a single service 
cannot be identified as [most effective]. It is the continuum of care that makes Title II 
effective - the broad array of services covered [in Florida]." The services identified in 
Table 2-3 in the Final Report of this study offer examples of the broad array of medical 

* The Title II surveys were completed before the approval by the Food and Drug 
Administration of the protease inhibitors. The expense of these new drugs, when used 
in combination therapies, may change this allocation of funding among Title II 
programs. 

ill 



and support services that comprise the continuum of care needed by people with HIV 
illness to guide the HIV consortia funded by Title 11. 

The study also identified the medical and financial criteria necessary for 
individuals to become eligible for HIV consortia services. The study documents that 
the state Title II programs have established generous income eligibility standards for 
services provided by HIV consortia, especially when compared to Medicaid eligibility 
standards. Hence, HIV consortia funded by Title II can provide services to people 
infected with HIV who have incomes too high to become eligible for Medicaid 
coverage. 

To coordinate HIV consortia programs with the state Medicaid programs. 
Medicaid representatives serve on Title II boards and committees in a number of 
states. In addition, case managers can assist individuals who have HIV disease with 
the Medicaid eligibility process. This role for case managers is important because a 
number of state AIDS program directors identified the Medicaid eligibility/application 
process as a barrier to the coordination of Medicaid with the Title II programs. 
Another barrier to Medicaid/Title II integration and coordination mentioned by AIDS 
program directors in a number of states is the administrative separation of the two 
programs in different state agencies. Coordinated meetings and cross-training 
programs can help overcome the integration problems created by this separate 
administration of the Medicaid and Title II programs. 

Generous eligibility criteria and coverage of a broad array of medical and 
support services by HIV consortia allow these Title II programs to strengthen the 
public-sector safety net for financing the care needed by people with HIV-related 



iv 



illness. HIV consortia funded by Title II provide needed care to people with HIV 
disease before they become eligible for Medicaid or Medicare.'* 

HIV/AIDS Drug Assistance Programs. Most Title ll-funded DAPs had 
formularies, with the number of drugs included ranging as high as 191 medications in 
New York during 1995. The decision to add new drugs to the DAP formulary is made 
by a board, panel, or committee in most states, with a number of states noting that the 
cost of medications or the availability of funds affects these decisions. Although it 
would allow health providers to prescribe the most appropriate drug therapies, the 
DAPs in some states do not allow the off-label use of medications. 

The study also identified the medical and financial criteria necessary for 
individuals to become eligible for DAPs. The study documents that the state Title II 
programs have established generous income eligibility standards for services provided 
by DAPs, especially when compared to Medicaid eligibility standards. Hence, DAPs 
funded by Title II can provide drug therapies to people infected with HIV who have 
incomes too high to become eligible for Medicaid coverage. 

DAPs funded by Title II in a number of states cover the prescription drug needs 
of Medicaid recipients with HIV or AIDS in excess of the Medicaid limits implemented 
in these states. However, the DAP in South Carolina responded that due to the lack 
of funds it can no longer cover the drugs needed by Medicaid recipients with HIV or 

^ For a person with HIV illness to become eligible for Medicare requires meeting 
eligibility criteria for Social Security Disability Insurance (SSDI), including 
disability status, sufficient work-related history, and a 29-month waiting period (5 
months from disability status for SSDI payment to begin, then 24 additional 
months for Medicare coverage to begin). (See Baily, M., Bilheimer, L, 
Woolridge, J., Langwell, K., and Greenberg, W. "Economic Consequences for 
Medicaid of Human Immunodeficiency Virus Infection." Health Care Financing 
Review (1990 Annual Supplement): 97-108. 



V 



AIDS that exceed the drug utilization limits implemented by the Medicaid programs in 
that state. DAPs also can provide drug coverage to people with AIDS or HIV who are 
in the process of becoming eligible for Medicaid benefits. 

DAPs in a number of states reported the use of waiting lists. Given the 
encouraging results of the new protease inhibitors in treating HIV infection, and the 
$12,000 to $15,000 annual cost of these and other drugs per person when used in a 
combination therapy or a "three-drug cocktail", the DAPs funded by Title II will face 
increasing fiscal pressures (Altman, 1996; Winslow, 1996). In fact, some states are 
already tightening eligibility, reducing the number of covered drugs, or implementing 
copayments (McGinley, 1996). If federal funding for Title II programs in the future 
does not keep pace with the expected increase in the number of people eligible for 
Title II services, and the costs of services provided, then the public-sector safety net 
for financing HIV-related care will be weakened. 

Home and Community-Based Care. The study identified a range of home 
and community-based care services funded by Title li in various states during 1995. 
Among the most effective services identified by the study are: case management, 
personal/attendant care, homemaker/chore services, home I.V. therapy, and 
transportation. 

Coordination of the Title II programs with the Medicaid Home and Community- 
Based Care Waiver programs will increase the range of services available to people 
with AIDS and HIV infection while conserving limited Title II resources. Contracting 
with Medicaid-certified providers of home and community-based services will allow the 
Title II programs to promote the continuity of care as patients become eligible for 
Medicaid, as well as help assure that Title II is the payer of last resort. 

vi 



Health Insurance Continuation Programs. In all states implementing the 
health insurance continuation program with Title II funds, the programs cover health 
insurance premiums, with a few states also covering copayments, coinsurance, and/or 
deductibles. The study documents that the state Title li programs have established 
generous income eligibility standards for assistance provided by the health insurance 
continuation programs. Hence, the health insurance continuation programs funded by 
Title II can provide coverage to people infected with HIV who have incomes too high 
to become eligible for Medicaid coverage. 

Title II Summary. Generous eligibility criteria and coverage of a broad array of 
health services by the programs funded by Title II of the CARE Act strengthens the 
public-sector safety net for financing the care needed by people with HIV-related 
illness. Title li programs provide needed care to people with HIV disease before they 
become eligible for Medicaid or Medicare. Generous eligibility criteria (or no income 
restrictions in some states), however, can become a double-edged sword. If federal 
funding for Title II programs is not sufficiently increased to keep up with the increasing 
number of people expected to receive benefits from Title II programs, or if future 
federal Medicaid reform allows the states to establish even more restrictive Medicaid 
eligibility standards, then the Title li programs may not be able to provide services for 
all eligible people. This could result in the use of waiting lists, reduced services, some 
other forms of rationing, or the implementation of more restrictive eligibility criteria. For 
example, the DAPs funded by Title II of the CARE Act in a number of states have 
implemented waiting lists for people to receive medications because funding is not 
adequate to meet the need for this coverage. If federal funding for Title II programs in 
the future does not keep pace with the expected increase in the number of people 

vii 



eligible for Title II services, then the public-sector safety net for financing HIV-related 
care will be weakened. 

Medicaid Home and Community-Based Care Waivers 

The Medicaid Home and Community-Based Care Waiver programs allow the 
states considerable flexibility in defining the groups of people to be served and the 
range of services to provide. These waivers allow the states to implement innovative 
programs to provide community-based, long-term care to people with AIDS. Given 
their disability status, people with AIDS who meet the more generous eligibility 
standards established for these waiver programs may receive services from the 
Medicaid Home and Community-Based Care waiver programs for the Elderly and 
Disabled or from a separate waiver for the Disabled (Buchanan, 1996).® In addition, 
15 states and the District of Columbia (implemented in December, 1996) have 
established AIDS-specific Medicaid Home and Community-Based Care waiver 
programs and Maine expects to implement this AIDS-specific waiver during 1997. 

Case management services are advocated as critical to the care of people with 
AIDS, with the role of the case manager extending beyond the coordination of health 
services to include helping people with AIDS cope with their social and emotional 
needs. As Tables 6-1 , 6-3, and 6-5 in the Final Report for this project demonstrate, 
the Medicaid Home and Community-Based Care waiver programs for people with 
AIDS, the Elderly and Disabled, and for the Disabled offer case management services 
in most states. Case management was identified by Medicaid administrators in the 
survey conducted for this research as among the most effective waiver services 

These waiver programs for the disabled, however, are limited in many states to 
the developmentally disabled. 

viii 



provided to people with AIDS. Other services provided by these waiver programs that 
the Medicaid administrators identified as most eifective at meeting the care needs of 
people with AIDS are: personal care, homemaker services, assistive technologies, 
emergency response, medical social services, in-home and inpatient respite care, 
counseling, home intravenous therapy, nutritional counseling and supplements, 
attendant care, hospice care, home-delivered meals, and unlimited prescription drug 
coverage. (See Tables 6-2, 6-4, and 6-6 in the Final Report.) State Medicaid 
programs not administering the AIDS-specific waiver program can include these 
services in their waiver programs for the elderly and disabled. Since people with AIDS 
are typically eligible for these waiver programs due to their disability status, even states 
without the AIDS-specific waiver can then offer Medicaid recipients with AIDS a broad 
range of needed home care and community-based services. 
State-Funded Medical Assistance Programs 

A number of states implement state-funded MAPs to provide health care to low- 
income people. However, a review of the literature revealed no published papers that 
describe these programs. A two-step survey process was used to identify states that 
implemented state-funded MAPs during 1997 and to collect data describing eligibility, 
coverage, and payment policies for these programs. 

Typically, requirements for MAP eligibility are restrictive but the range of health 
services covered tends to be comprehensive in most states. MAP payment levels for 
the health services included in the study typically are less than the Medicaid payment 
level, which may make it difficult for MAP beneficiaries to gain access to these 
services. In spite of these eligibility and payment level restrictions, these state-funded 
MAPs can provide health coverage to people with HIV disease who lack other health 

ix 



insurance. As Table 7-2 in the Final Report illustrates, most of these state-funded 
MAPS cover a comprehensive range of health services needed by people infected with 
HIV, including acute care services and prescription drugs, as well as necessary home 
and community-based care and support services. 
AIDS Service Organizations 

Public programs are the primary payers for the health and care-related services 
provided to people with HIV. The coverage, payment, and utilization policies 
implemented by these public programs affect the care that people with HIV receive. 
ASOs were surveyed to identify effective services covered, and effective services that 
are not covered, by these public payers of HIV-related care, as well as to identify 
problems that people with HIV illness have with these programs. 

As Table 8-1 in the Final Report illustrates, the state Medicaid programs cover a 
range of health services that meet the needs of people with HIV, with prescription drug 
coverage mentioned most frequently by the ASOs. However, a number of states place 
restrictive utilization limits on these health services (for example, three prescriptions 
per month), often below the levels needed by people with HIV illness. Table 8-1 in the 
Final Report also presents effective health and care-related services that the state 
Medicaid programs do not cover. All of these services can be provided with the 
Medicaid home and community-based care waiver programs for people with AIDS/HIV 
and for the elderly and disabled (people with AIDS can access this programs due to 
their disability status). Expanded use of these waiver programs would allow the state 
Medicaid programs to target effective health and care-related services to people with 
HIV illness. In addition, due to more generous income eligibility standards, it is easier 



X 



for people with HIV to qualify for these waiver services than for traditional Medicaid 
coverage (Buchanan, 1996). 

Table 8-2 in the Final Report presents effective health and care-related services 
provided to people with HIV that are funded by Title 11 of the Ryan White CARE Act. In 
addition to prescription drugs and physician services, the Title II programs offer 
support-related services such as food and nutrition, transportation, alternative 
therapies, mental health and support groups, adult and child day care, and legal 
services. Limited funding for Title II programs was the problem most frequently 
identified by the ASOs. A number of ASOs also mentioned a lack of awareness of 
Title II programs as a problem for people with HIV illness. 

As Table 8-3 in the Final Report summarizes, the ASOs identified a blend of 
both health care and social services funded by Title I of the Ryan White CARE Act as 
most effective at meeting the needs of people with HIV illness. One ASO responded 
that the Title I program in its service area does not cover support services for family 
and friends of people with HIV disease, with these people feeling "left out." Another 
ASO reported the lack of transportation to care results in the loss of care. 

As Table 8-4 in the Final Report presents, the Medicare program covers a range 
of health services necessary for the treatment of acute illness, except for prescription 
drugs. Given the success of the combination drug therapies in combatting the 
progression of HIV disease, the ASOs identified the lack of Medicare coverage of 
prescription drugs as a major problem for people with HIV illness. One ASO 
responded that if Medicare was "the only health insurance a disabled person has, lack 
of access to medications is a significant problem." Another ASO noted that given the 
focus of Medicare coverage on acute care/medical care, the lack of Medicare 

xi 



coverage of support services is a problem for people with HIV disease. The length of 
time for Medicare eligibility (29 months) is a severe problem for people with HIV illness. 
Medicare cost sharing responsibilities can be more than most people with AIDS can 
afford. 

One ASO responded that the Title II programs need to address the concerns of 
people who may recover from HiV-related disability with job and re-education 
programs. Given the success of the combination drug therapies in combatting the 
progression of HIV disease, all public programs covering HIV-related care, not just the 
CARE Act programs, will need to address the health and care-related needs of people 
who recover from HIV-related disability. If people recover from HIV-related disability, 
will they lose their disability status? This disability status, for example, is a key element 
of eligibility for Medicaid coverage. Without this coverage, will they still have access to 
the combination drug therapies and other health and care-related services that led to 
their recovery? The eligibility of people who recover from HIV-related disability for 
public programs will become an increasingly important issue in the near future as new 
developments in drug therapies and other treatments combat the progression of HIV 
disease. 

Tuberculosis Control Policies 

Incentives and Enablers for Compliance with TB Drug Regimens. The 

results of the survey conducted for this study indicate that public health departments 
in almost all states are implementing the incentives and enablers that TB experts 
advocate to encourage patients to comply with drug regimens in efforts to control this 
disease. The implementation of these TB incentives, along with public health 
screening and treatment programs combined with dramatically increased federal 

xii 



funding for TB control during federal fiscal year 1993, may help to explain why the 
incidence of TB resumed its long term decline in the United States in 1993 after a 
decade of resurgence. 

Public Programs to Fund Treatment Services. Aggravating and enhancing 
the threat of TB in the United States has been the emergence of AIDS. The spread of 
TB among people with AIDS has important public health consequences because TB 
may be the only AIDS-related disease that can be transmitted to people who are not 
infected with HIV (Hopewell, 1992). With the increasing incidence of AIDS in the 
United States, public health programs must be maintained and expanded to control TB 
to protect the public health and the health of people with AIDS. 

Based on the results observed in New York City and other areas, DOT 
programs have been successful in the control and treatment of TB. Similarly, nursing 
case management offers a comprehensive approach to TB treatment, assigning 
outreach workers, initiating DOT, and assisting the TB patient with any necessary 
services to ensure compliance with therapy. According to the responses to the survey 
conducted for this study, public health departments in all states reported the use of 
DOT programs and most states utilized nursing case management. 

The increased use of nursing case management, TB outreach workers, and 
DOT programs to treat and control TB may require increased public health 
expenditures during the short term in a political environment of contracting public 
resources. However, each dollar spent on TB control programs produces savings of 
three to four dollars in averted TB treatment costs, with even greater savings produced 
by controlling multi-drug resistant TB Institute of Medicine, 1992). Hence, nursing 



xiii 



case management, DOT, outreach workers and other TB control efforts are highly 
cost/effective (Frieden, et al., 1995). 

Evaluating TB patients for eligibility for Medicaid, Medicare, and the Ryan White 
programs can provide resources to care for people with TB. The home and 
community-based care programs funded by Medicaid and by Title II of the CARE Act 
can be especially helpful to public health departments in the fight against TB, covering 
case managers, outreach workers, and the health professionals for DOT programs 
provided to eligible people with TB. 

The results of the survey conducted for this study indicate that public health 
departments in almost all states are implementing the programs and policies that TB 
experts advocate to control this disease. The resurgence of TB in the United States 
during the 1980s, however, illustrates that the danger of TB to the nation's health is a 
constant threat. Utilizing Medicaid, Medicare, and the programs funded by the Ryan 
White CARE Act can provide additional resources to fund case management, directly 
observed therapy, outreach programs, and other services that are effective at 
combatting TB among people with HIV infection. 

Policy Implications 

This study creates a state-by-state archive of state-administered health 
programs available to people with HIV. These data help identify any holes in the 
public-sector safety net of health coverage for people with HIV-related conditions and 
identify other state-administered programs that help close these gaps in coverage. 
Successful innovations developed by individual states that develop a comprehensive 
range of state-administered programs can serve as models to guide other states in 



xiv 



developing AIDS-related policies that assure all people with HIV have access to 
necessary social and health services. 

Conclusions 

Given the success of the combination drug therapies in combatting the 
progression of HIV disease, all public programs covering HIV-related care will need to 
address the health and care-related needs of people who recover from HIV-related 
disability. If people recover from HIV-related disability, will they lose their disability 
status? This disability status, for example, is a key element of eligibility for Medicaid 
coverage. Without this coverage, will they still have access to the combination drug 
therapies and other health and care-related services that led to their recovery? The 
eligibility of people who recover from HIV-related disability for public programs will 
become an increasingly important issue in the near future as new developments in 
drug therapies and other treatments combat the progression of HIV disease. The 
recovery from HIV-related disability and adequate funding for public programs to 
provide health coverage to people with HIV are among the most important HIV-related 
issues in future public policy debates. 



XV 



References 



Altman, L "Scientists Display Substantial Gains in AIDS Treatment." The New York 
Times . July 12, 1996, pp. 1, A9. 

Buchanan, R. "Medicaid Eligibility Policies for People with AIDS." Social Work in Health 
Care . 1996; 23: 15-41. 

Frieden, Fujiwara, Washko, and Hamburg. 'Tuberculosis in New York City, Turning the 
Tide." The New England Journal of Medicine . 1995; 333: 229-233. 

Hopewell, P. "Impact of Human Immunodeficiency Virus Infection on the 

Epidemiology, Clinical Features, Management, and Control of Tuberculosis." 
Clinical Infectious Disease . 1992; 15: 540-547. 

Institute of Medicine. Emerging Infections: Microbial Threats and Health in the United 
States , eds. J. Lederberg, R.E. Shope, and S.C. Oaks, jr. (Washington, D.C.: 
National Academy Press, 1992). 

McGinley, L. "States Move to Ration Promising AIDS Drugs." The Wall Street Journal . 
August 22, 1996, pp. B1, 86. 

Winslow, R. Health Insurers and HMOs Say They'll Pay for New AIDS Drugs." The Wall 
Street Journal . July 12, 1996, pp. A3, A6. 



xvi 



Chapter 1 
The Ryan White CARE Act: 
The Allocation of Title II Funding Among Programs by the States* 

Introduction 

The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act 
became law in August, 1990 with the objective to improve both the quality and 
availability of care for people with HIV disease and their families.'' This legislation 
authorized: grants to metropolitan areas with the largest number of AIDS cases to 
help provide emergency services (Title I); grants to the states to improve the quality, 
availability, and organization of health and related support services (Title II); grants to 
state health departments for AIDS early intervention services (Title lll-a) and 
community-based primary care facilities (Title lll-b); and grants for research and 
evaluation initiatives (Title IV).^ Title II allows states to allocate funds among any or all 
of four areas: to cover home-based health services; to provide medication and other 
treatments; to continue private health insurance coverage; or to fund HIV care 
consortia.^ The objective of this paper is to identify how the states are allocating Title 
II funds among these four areas, as well as for planning, evaluation, and 
administration. (The states may use up to 10 percent of Title II funds for planning, 
evaluation, and administration.)"* In addition, the paper presents the number of 
people receiving Title II benefits in each state, as well as the assessments of which 
Title II services or programs are the most effective at meeting the care needs of 
people with HIV. 

*rhis research is published in AIDS & PUBLIC POLICY JOURNAL, Vol. 12, No. 
3, 1997. 

1 



Methodology 

To identify how the states are allocating Title II funds, the state AIDS program 
directors were surveyed. The names and addresses of these directors in each state 
were obtained from the National Alliance of State and Territorial AIDS Directors^ and 
the federal Health Resources and Services Administration.® A questionnaire was 
mailed to the AIDS program directors in May, 1995, with three additional mailings sent 
to states not responding. When the survey was completed in early 1996, AIDS 
program directors (or their staffs) in 49 states and the District of Columbia provided 
data (no reply was received from Rhode Island). The survey responses were 
summarized into tables and mailed to the survey participants for verification and 
updates in April, 1996. 

Funding Allocation 

The questionnaire asked the AIDS program directors to indicate how Title 11 
funds were allocated among HIV consortia, HIV/AIDS drug assistance programs 
(DAP), home and community-based care, continuity of private health insurance 
coverage, and planning, evaluation, and administration in their state during 1995, 1994, 
and 1993. The responses are summarized in Table 1-1. In most states the majority of 
Title II funds were allocated to HIV consortia. In many states the funding trend has 
been a declining percentage of funds allocated to HIV/AIDS DAP and an increasing 
percentage of funds allocated to HIV consortia. In a number of states the AIDS 
program directors reported that while funds may not have been directly allocated to a 
particular program area, HIV consortia provided these services. In Texas, for example, 
home and community-based care services and the continuation of private health 
insurance are among the services provided by HIV consortia. In addition, in 

2 



Table 1-1 

Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Allocation of Funding 





Percentage Allocation of Title II Funds 


HIV Consortia 


AIDS/HIV Drugs 


Home and Community 
Based Care Services 


Continuity of Private 
Health Insurance 


Planning, Evaluation 
and Administration 


1995 


1994 


1993 


1995 


1994 


1993 


1995 


1994 


1993 


1995 


1994 


1993 


1995 


1994 


1993 


Alabama 


50% 


22.5% 


17% 


50% 


54.7% 


74.7% 


not 
applic. 


16.5% 


not 

applic. 


not 
applic. 


not 
applic. 


not 
applic. 


not 
applic. 


6.3% 


8.2% 


Alaska 


100% 


99% 


99% 


Part of Consortium 
activities 


Part of Consortium 
activities 


Part of Consortium 
activities 


0% 


1% 


1% 


Arizona 


76.5% 


75.4% 


46.8% 


17.9% 


21% 


50.6% 


0% 


0% 


0% 


0% 


0% 


0% 


5.6% 


3.6% 


2.6% 


Arkansas 


97% 


90% 


91% 


60% 


60% 


60% 


no 
answer 


no 
answer 


no 
answei 


no 
answer 


no 
answer 


no 
answei 


10% 


10% 


10% 


California 


50% 


50% 


50% 


30.3% 


30% 


29.5% 


4.7% 


4.7% 


7.0% 


5.0% 


5.3% 


3.5% 


10% 


10% 


10% 


Colorado 


84.5% 


84.8% 


47% 


3.1% 


3.4% 


37% 


included in 
consortium 


6% 


2.4% 


1.8% 


0% 


10% 


10% 


10% 


Connecticut 


67% 


65% 


55% 


23% 


25% 


35% 


0% 


0% 


0% 


0% 


0% 


0% 


10% 


10% 


10% 


Delaware 


50% 


45% 


21% 


25% 
Oncluc 


29% 
les treat 


35% 
ments) 


13% 


10% 


18% 


10% 


15% 


24% 


4% 


2% 


3% 


District of 
Columbia 


55% 


59% 


54% 


21% 


22% 


21% 


14% 


9% 


15% 


no 


t applies 


ible 


10% 


10% 


10% 


Rorida 


51% 


53% 


50% 


31% 


34% 


37% 


not applicable 


12% 


7% 


4% 


6% 


6% 


9% 


Georgia 


55% 


57% 


50% 


21% 


22% 


32% 


1% 


1% 


1% 


16% 


14% 


13% 


7% 


6% 


4% 


Hawaii 


45% 


45% 


45% 


24% 


24% 


24% 


0% 


0% 


0% 


21% 


21% 


21% 


10% 


10% 


10% 


Idaho 


46.8% 


46.8% 


0% 


48.2% 


48.2% 


95% 


no 


t applies 


ible 


no 


t applies 


Ible 


data 


not ava 


liable 


Illinois 


72% 


70% 


50% 


11% 


10% 


31% 


0% 


0% 


0% 


11% 


13% 


10% 


1% 


2% 


4% 


Indiana 


53% 


36% 


• 


42%** 


58% 


* 


0% 


0% 


* 


0% 


0% 


* 


5% 


6% 


« 


* data not available; ** *We have carry-over from our first year that we will be adding to this [drug assistance] program. 

The actual amount will increase." 


Iowa 


90% 


90% 


90% 


included in consortia 
program decentralized 


0% 


0% 


0% 


0% 


0% 


0% 


10% 


10% 


10% 


Kansas 


36% 


38% 


0% 


44% 


42% 


72% 


7% 


7% 


9% 


3% 


3% 


9% 


10% 


10% 


10% 


Kentucky 


0% 


0% 


0% 


38.9% 


39.3% 


32.4% 


37.5% 


41.1% 


43.4% 


21.3% 


18.9% 


20.0% 


2.3% 


0.7% 


4.2% 


Louisiana 


75% 


75% 


75% 


0% 


0% 


0% 


15% 


15% 


15% 


10% 


10% 


10% 


5% 


5% 


5% 


Maine 


0% 


0% 


0% 


40% 


0% 


35% 


52% 


42% 


40% 


0% 


0% 


0% 


10% 


0% 


0% 


Maryland 


68% 


65% 


71% 


13% 


14% 


7% 


9% 


11% 


12% 


0% 


0% 


0% 


10% 


10% 


10% 


Massachusetts 


75% 


75% 


75% 


10% 


10% 


10% 


10% 


10% 


10% 


0% 


0% 


0% 


5% 


5% 


5% 


Michigan 


80% 


78% 

(Dl 


75% 
ring 195 


10% 

15 an esl 


10% 
imated 


10% 
2% of to 


2% 
tal spen 


5% 
ding wa< 


8% 
s allocat 


0% 
ed to wc 


0% 
men, dt 


0% 
lildren a 


5% 
nd fami 


6% 
ies.) 


4% 


Minnesota 


no 


t applicf 


ibie 


11% 


15% 


46% 


70% 


54% 


41% 


9% 


21% 


13% 


10% 


10% 


10% 


Mississippi 


0% 


0% 


0% 


66% 


66% 


66% 


33% 


33% 


33% 


0% 


0% 


0% 


0% 


0% 


0% 


Missouri 


50% 


50% 


50% 


24% 


22% 


42% 


0% 


0% 


0% 


0% 


0% 


0% 


10% 


10% 


10% 


Montana 


51.0% 


52.8% 


not 
avail. 


42.0% 


40.0% 


not 

avail. 


0% 


0% 


not 
avail. 


7.0% 


7.2% 


not 
avail. 


0% 


0% 


not 
avail. 


Nebraska 


56% 


42% 


20% 


34% 


42% 


67% 


0% 


0% 


3% 


0% 


6% 


N.A. 


10% 


10% 


10% 



3 



Table 1-1 

Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Allocation of Funding 





Percentage Allocation of Title II Funds 


HIV Consortia 


AIDS/HIV Drugs 


Home and Community- 
Based Care Services 


Continuity of Private 
Health Insurance 


Planning, Evaluation 
and Administration 


1995 


1994 


1993 


1995 


1994 


1993 


1995 


1994 


1993 


1995 


1994 


1993 


1995 


1994 


1993 


Nevada 


28% 


16% 


5% 


32% 


35% 


50% 


30% 


39% 


35% 


0% 


0% 


0% 


10% 


10% 


10% 


New Hampshire 










data not 


availabi 


e 














New Jersey 


50% 


50% 


50% 


28% 


27% 


31% 


9% 


12% 


10% 


3% 


2% 


0% 


10% 


10% 


10% 


New Mexico 












(Verified ( 
40% 1 0% 


data not 


available) 
0% 1 0% 












New York 


58% 


54% 


50% 


33% 


36% 


("Home an( 
services are pro 


0% 
i Comm 
/ided th 


unity-based 
rough consortia. 


0% 


0% 


9% 


10% 


10% 


North Carolina 


90% 


90% 


90% 


0% 


0% 


0% 


0% 


0% 


0% 


0% 


0% 


0% 


10% 


10% 


10% 


North Dakota 


35% 


35% 


35% 


55% 


55% 


55% 


0% 


0% 


0% 


0% 


0% 


0% 


10% 


10% 


10% 


Ohio 


50% 


50% 


50% 


30% 


30% 


30% 


2% 


2% 


0% 


0% 


0% 


0% 


4% 


4% 


0% 


Oklahoma 


32% 


23% 


22% 


45% 


48% 


71% 


16% 


20% 


0% 


0% 


0% 


0% 


7% 


8% 


7% 


Oregon 


77% 


66% 


47% 


14% 


25% 


43% 


0% 


0% 


0% 


0% 


0% 


0% 


9% 


9% 


10% 


Pennsylvania 


95% 


77% 


50% 


0% 


18% 


45% 


0% 


0% 


0% 


0% 


0% 


0% 


5% 


5% 


5% 


Rhode Island 


no response 
to the survey 


























South Carolina 


79% 


79% 


54% 


12% 


16% 


38% 


0% 


0% 


0% 


0% 


0% 


0% 


9% 


4% 


8% 


South Dakota 


0% 


0% 


0% 


70% 


70% 


70% 


15% 


15% 


15% 


5% 


5% 


5% 


10% 


10% 


10% 


Tennessee 


78% 


62% 


0% 


5% 


6% 


96% 


8% 


25% 


0% 


0% 


0% 


0% 


9% 


7% 


4% 


("In March, 1995 a new administration took over Ryan White [in Tennessee! and much revamping is in process.") 


Texas 


75% 


75% 


82% 


17% 


17% 


11% 


included in 
HIV consortium 


included in 
HIV consortium 


8% 


8% 


7% 


Utah 


60% 


63% 


no 
answei 


25% 


24% 


no 
answei 


10% 


8% 


no 
answei 


0%***| 0% 1 0% 


5% 


5% 
(admin. 


0% 


***unless funding 
is increased 


Vermont 


32% 


30% 


30% 


65% 


60% 


67% 


0% 


0% 


0% 


0% 


0% 


0% 


2% 


10% 


3% 


Virginia 


60% 


61% 


64% 


24% 


24% 


27% 


0% 


0% 


0% 


6% 


5% 


0% 


10% 


10% 


9% 


Washington 


71% 


71% 


69% 


9% 


14% 


20% 


10% 


5% 


1% 


0% 


0% 


0% 


10% 


10% 


10% 


West Virginia 


67% 


55% 


64% 


30% 


40% 


33% 


0% 


0% 


0% 


0% 


0% 


0% 


3% 


5% 


3% 


Wisconsin 


86% 


85% 


90% 


2.5% ~ 


2.5% ~ 


0%- 


0% 


0% 


0% 


2.5%~ 


2.5% ~ 


0%- 


10% 


10% 


10% 


-"State funds purchase medications and pay [health insurance] premiums; 
Ryan White funds cover program [administrative! costs." 


Wyoming 


0% 


0% 


0% 


80% 


80% 


80% 


5% 


5% 


5% 


8% 


8% 


8% 


7% 


7% 


7% 



NOTE: See the note at the end of this chapter for references to other research providing detailed presentations of the implementation 

of each of these four programs funded by Trtle II of the Ryan White CARE Act in each state. 

Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the Ryan White CARE Act. This research was funded by a grant from the 

Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



4 



Wisconsin state funds purchase medications and pay premiums for tine continuation of 
private health insurance. 

The Number of Title II Beneficiaries 

The questionnaire asked the AIDS program directors to "provide the number of 
people with HIV who received benefits from all Title II programs in your state during 
1994." These data are reported in Table 1-2. The questionnaire also asked the AIDS 
program directors to estimate how the number of people receiving Title II benefits in 
their state during 1995 compared to 1994 and to compare the number of Title II 
beneficiaries in 1994 to the number in 1993. As Table 1-2 illustrates, the AIDS 
program directors in most states responded that the number of Title II beneficiaries 
increased in 1995 and 1994 when compared to the previous year. 

Effective Title II Services 

The questionnaire asked the AIDS program directors to list the Title II services 
and programs most effective at meeting the care needs of people with HIV in their 
state during 1995. Their responses are summarized in Table 1-2. Among the most 
frequently mentioned services or programs are: the HIV consortia; the HIV/AIDS 
DAPs; case management services; and various home health services. However, as 
Table 1-2 illustrates, the survey identified a wide range of services and programs that 
the AIDS program directors considered most effective at meeting the care needs of 
people living with HIV. As the response from Virginia indicates: This [listing of the 
most effective Title II services and programs] is difficult to say because [Title II] is 
considered such a successful program." 



5 



Table 1-2 

Programs Funded by Title II (rfthe Ryan White CARE Act during 1995: 
The Number of People Receiving Title II Benefits and Medicaid Coordiriation with Title II 





The Number of People Receiving Title II Benefits: 


The Most Effective Title II Services and Programs 
Meeting the Care Needs of People with HIV During 1995: 


1994 


1995 Compared to 1994 


1994 Compared to 1993 


Alat>ama 


2.000 


increase in 1 995 


increase in 1994 


drug reimbursement and consortia 


Alaska 


370 


remain the 
same 


increase in 1994 


case management through consortia lead agencies 


Arizona 


1.500 


increase in 1995 


increase in 1994 


primary medical care, dental servk^, case management 
and the drug assistance program (DAP) 


Arkansas 


1.068 


increase in 1995 


increase in 1994 


primary care, drugs, case management, and lab monitoring 


California 


40.330 


increase in 1995 


increase in 1994 


'All programs ^ective at meeting needs of specific 
target populations.* 


Colorado 


4.800 


increase in 1995 


increase in 1994 


'Case managemerrt services, primary health ar>d dental care. 
AIDS Drug Assistance program and insurance 
continuation program are very effective.* 


Connecticut 


1,150 
(unduplicated) 


irtcrease in 1995 


increase in 1994 


case mgt services, transportation assistance, client special 
care fund, primary care services 


Delaware 


1.000 


increase in 1995 


increase in 1994 


drug reimbursement and consortium 


District of 
Columbia 


2.158 


increase in 1995 


increase in 1 994 


D.C. Consortium: case mgt; AIDS Drug Assistance Program; 
l-k>me & Community Based Care Program 


Fk>rida 


19.705 


increase in 1995 


increase in 1994 


rK> answer to the question 


Georgia 


5.265 


increase in 1995 


increase in 1994 


statewide consortia 


Hawaii 


830 


decrease in 1995 


increase in 1994 


*A1I programs effective at meeting rteeds of 
specific target populations.* 


klaho 


80 


increase in 1995 


increase in 1994 


no answer to this question 


lllirKHS 


5.600 


increase in 1995 


increase in 1994 


no answer to this question 


Indiana 


no 
answer 


increase in 1995 


irtcrease in 1994 


drug assistance program, earty intervention services, and 
care coordination 


Iowa 


700 


increase in 1995 


increase in 1 994 


case mgt, drug assistance, assistance with housing, 
and emergency assistance 


Kansas 


175 


increase in 1995 


irtcrease in 1 994 


Case mgt *really helps to bring people to needed services.* 


Kentucky 


1.329 


increase in 1995 


increase in 1 994 


Home & Community Based Care program (transportation, 

respite care, dental, and primary care) and the drug 
assistance program purchasing 16 HIV-related medications 


Louisiana 


3.500 


no answer 


no answer 


all services 


Maine 


7504- 


ir>crease in 1995 


irx^rease in 1 994 


case mgt services funded with Title II and state funds 


iviaryiand 


9.465 


increase in 1995 


increase in 1994 


*We believe that each Title IMunded service is effective.' 


Massachusetts 


5,000 


increase in 1995 


increase in 1994 


drug reimbursement consortia client services, and honrra 
and community-based care 


Michigan 


5.500 
rK3t undu- 
plicated 


During these time p 
unduplicate clients 


eriods *we coukl rK>t 
across provklers.* 


case management and drug assistance 


Minnesota 


1.138 


increase in 1995 


increase in 1994 


insurance continuation, drug program, case management 
and dental program 


Mississippi 


336 


increase in 1 995 


increase in 1994 


drug assistance program and home-based program 


Missouri 


1.471 


increase in 1995 


increase in 1994 


medication, home health, and servKe coordination are the 
most frequently utilized. 


Montana 


110 


remain the same 


decrease in 1994 


consortium care and drug reimtHirsement program 


Nebraska 


400 


increase in 1995 


increase in 1994 


consortia client services and drug assistance program 



6 



Table 1-2 

Programs Funded by Title II of the Ryan White CARE Act during 1995: 
The Number of People Receiving Title II Benefits and Medicaid Coordination with Tide II 





The Number of People Receiving Title II Benefits: 


The Most Effective Title II Services and Programs 
Meeting the Care Needs of People with HIV During 1995: 


1994 


1 995 Compared to 1 994 


1994 Compared to 1993 


^4evada 


2.750 


increase in 1995 


increase in 1994 


consortium services for people without care and drug assistance 
program *has been expanded and has been a 
tremendous success for clients.* 


New Hampshire 






data not av< 


)iiat>le 


New Jersey 


14.105 


increase in 1995 


increase in 1994 


AIDS Dmg Programs, HIV Home Care Program, HIV 
Health Insurarfce Continuation Program 


New Mexico 


6004- 


increase in 1995 


increase in 1994 


no answer to the question 


New York 


160.000* 


increase in 1995 


increase in 1994 


primary care, therapeutic drugs, home care, case management 
nutrition/foods, transportation, counseling, and support 


"Unduplicated count; includes approximately 100,000 people reached through informational and outreach services* 


North Carolina 


about 
3,000 


increase in 1995 


increase in 1994 


case management in-home care, and transportation 


North Dakota 


12 


increase in 1995 


increase in 1994 


drug reimbursement 


Ohio 


3,120 


increase in 1995 


increase in 1994 


drug assistance program and home health 


Oklahoma 


652 


increase in 1995 


increase in 1994 


HIV Home Health Program (Home and Community Care) 
and case management (HIV Corfsortium) 


Oregon 


3,000 


increase in 1995 


increase in 1994 


medical care, case mgt. counseling; client advocacy, 
and drug assistance program 


Pennsylvania 


not 
available 


increase in 1995 


increase in 1994 


Many programs appear responsive to the health care needs of 
people with AIDS arKi HIV. *Evaluation has not indicated that 
one nfKKiel works best in part due to differences between rural 
and urtian systems of health care.* 


Rhode Island 


no res 


x>nse to the survey 






South Carolina 


3.000 


increase in 1995 


increase in 1994 


*HIV consortia in South Carolina are doing a terrific job and the 
drug assistance program is too.* 


South Dakota 


34 


increase in 1995 


remain the 
same 


providing drugs 


Tennessee 


over 200 


increase in 1995 


decrease in 1994 




**During 1 993 1 00% of Title II funding went to the drug assistance program. In 1 994 Medicaid was dropped and a managed care program 
[TennCare] was implemented. *Thus between 1994 and 1995 we totally revamped our entire Title II program. Not everything is fully up arKi 
running yet except case managers. So it is hard to give a good overview. TennCare covers all MedicakJ recipients plus uninsurables and 
working poor. Much goes for case managers, dental, and other support services.' 


Texas 


9.183 


increase in 1995 


increase in 1994 


health insurance continuation program 


Utah 


670 
(unduplicated) 


increase in 1995 


increase in 1994 


'Drug therapy, ti^n otiier essentials such as dental, labwork.* 


Vermont 


55 


increase in 1995 


increase in 1994 


drug assistance fund 


Virginia 


2,600 


increase in 1995 


increase in 1994 


This is difficult to say because this is considered 
such a successful program.' 


Washington 


1.800 


remain the 
same 


increase in 1994 


'Consortia and prescription treatments.' 


West Virginia 


380 


increase in 1995 


increase in 1994 


Consortia 


Wisconsin 


850 


increase in 1995 


increase in 1994 


case management and transportation 


Wyoming 


60 


increase in 1995 


increase in 1 994 


drugs, primary care, and lab tests 


NOTE: See the note at the end of this chapter for references to other research providing detailed presentations of the implementation 
of each of these four programs funded by Title II of the Ryan White CARE Act in each state. | 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1 995 survey of state 
program administrators. Title II of the Ryan White CARE Act This research was funded by a grant from the 
Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 1 8-P-90286/5-01). 



7 



Summary and Discussion 

The study presents how the states are allocating Title II funds, with most states 
spending the largest share of Title II funds on HIV consortia. Among the programs 
and services considered to be most effective at meeting the care needs of people 
living with HIV are: the HIV consortia; the HIV/AIDS DAPs; case management; and 
various home health services. The AIDS program directors in most states expect the 
number of Title II beneficiaries to increase. If federal funding for Title II programs does 
not increase to keep pace with the increasing number of people expected to receive 
Title II benefits, then the Title II programs may not be able to provide services for all 
eligible people. This could result in the use of waiting lists, reduced services, some 
other forms of rationing, or the implementation of more restrictive eligibility criteria. 
Inadequate federal funding of CARE Act programs will weaken the public-sector safety 
net for financing HIV-related care. 



NOTE: Detailed discussions of each of the four programs funded by Title II of the 
Ryan White CARE Act in each state have been published in AIDS & PUBLIC POLICY 
JOURNAL: Buchanan, "Consortia Programs Funded by Title II of the Ryan White 
CARE Act," AIDS & PUBLIC POLICY JOURNAL 11(3), 1996; Buchanan and Smith, 
"Drug Assistance Programs Funded by Title II of the Ryan White CARE Act," AIDS & 
PUBLIC POLICY JOURNAL 11(4), 1996; Buchanan, "Home and Community-Based 
Care Programs Funded by Title II of the Ryan White CARE Act," AIDS & PUBLIC 
POLICY JOURNAL 12(1), 1997; and Buchanan, "Health Insurance Continuation 
Programs Funded by Title II of the Ryan White CARE Act," AIDS & PUBLIC POLICY 
JOURNAL 12(2), 1997. 



Acknowledgements: The author thanks the state AIDS program directors and the 
people on their staffs who took the time to answer the questionnaires that collected 
the data necessary for this research. Without their cooperation this study would not 
have been possible. This research was funded by the Health Care Financing 
Administration, U.S. Department of Health and Human Services (grant #18-P-90286/5- 
02). The views expressed in this paper are those of the author. No endorsement by 
the Health Care Financing Administration Is intended or should be inferred. 



8 



References 



1. U.S. Department of Health and Human Services, Information about the Ryan 
White Comprehensive AIDS Resources Emergency Act of 1990 (Rockville, MD: 
Bureau of Health Resources Development, August, 1993). 

2. McKinney, M.M., Wieland, M.K, Bowen, G.S., Goosby, E.P., and Marconi, KM. "States' 
Responses to Title II of the Ryan White CARE Act' Public Health Reoorts Vol.108. No.1 (1993): 4- 
11. 

3. Health Care Financing Administration, U.S. Department of Health and Human Sen/ices, Improving 
Coordination Between Medicaid and Title II of the Ryan White CARE Act (Baltimore, MD: Office of 
Legislative and intergovernmental Affairs, April 28, 1995). 

4. McKinney, M.M., Wieland, M.K., Bowen, G.S., Goosby, E.P., and Marconi, K.M. 
"States' Responses to Title II of the Ryan White CARE Act," Public Health 
Reports Vol.108, No.1 (1993): 4-11. 

5. National Alliance of State and Territorial AIDS Directors, National Alliance of State and Territorial 
AIDS Directors - 1995 Directory (Washington, DC: 1995). 

6. U.S. Department of Health and Human Services, Health Resources and Services Administration, 
Bureau of Health Resources Development, Division of HIV Services, Rvan White CARE Act Title II 
State Contacts - FY 1995 Trtle II Contacts (Rockville, MD: September 28, 1995). 



9 



Chapter 2 

Consortia Services Funded by Title II of the Ryan White CARE Act^ 

Introduction 

The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act (Public 
Law 101-381) was enacted in August, 1990 to improve both the quality and availability 
of care for people with HIV disease and their families.^ The original legislation 
authorized: grants to metropolitan areas with the largest number of AIDS cases to 
help provide emergency services (Title I); grants to the states to improve the quality, 
availability, and organization of health and related support services (Title II); grants to 
state health departments for AIDS early intervention services (Title lll-a) and 
community-based primary care facilities (Title lll-b); and grants for research and 
evaluation initiatives, including demonstration programs for pediatric AIDS research 
(Title IV).^ Title II of the CARE Act allows states to allocate funds among any or all of 
four areas to cover home-based health services, to provide medication and other 
treatments, to continue private health insurance coverage, or to fund HIV care 
consortia.^ 

Although the Ryan White legislation did not established income eligibility 
restrictions for people to receive CARE act services, the law did specify that CARE Act 
programs must be the payer of last resort."^ However, Ryan White funds can be used 
to pay for care provided to Medicaid recipients if the state Medicaid program does not 
cover a needed health service or if a Medicaid recipient's need for a health service 
exceeds the Medicaid program's limits on utilization. If a state Medicaid program does 

^his research is published in AIDS & PUBLIC POLICY JOURNAL, Vol. 11, No. 
3, 1996. 

10 



not cover hospice care, for example, a Medicaid recipient can receive that service 
through a program funded by the CARE Act, if available. Similarly, if a Medicaid 
recipient needs more home nursing visits then allowed by the state Medicaid program, 
programs funded by the CARE Act may pay for additional home nursing care.^ 

HIV care consortia are responsible for planning and coordinating a 
comprehensive continuum of outpatient health and related support services.^ The 
CARE Act specifies five functions for consortia: assess the service needs of all 
populations with HIV disease; develop a comprehensive continuum of outpatient 
health and related support services to meet the identified needs; promote the 
coordination and integration of community resources; use case management to 
assure continuity of services; and evaluate the consortia's effectiveness at meeting 
service needs and providing cost-effective alternatives to inpatient hospital care/ The 
objective of this paper is to identify how the states are using Title II funds to provide 
consortia services. The paper discusses characteristics of the consortia established 
by the states, the health services and related support services provided by the 
consortia, medical and financial eligibility criteria, and coordination with the state 
Medicaid program. 

Methodology 

To identify how the states are using Title II funds to implement consortia 
programs, state AIDS program directors were surveyed. The names and addresses of 
these directors in each state were obtained from the National Alliance of State and 
Territorial AIDS Directors.® In addition, the address file was updated with the names 
and addresses of AIDS program directors obtained from the Health Resources and 
Services Administration of the federal government.® 

11 



Survey Process 

A consortia questionnaire was mailed to these AIDS program directors in May, 
1995. Three additional mailings of the questionnaires were sent to the states not 
participating in the survey. When the survey was completed in early 1996, AIDS 
program directors (or their staffs) in 48 states and the District of Columbia provided 
consortia data (no replies were received from New Hampshire and Rhode Island). 
The survey responses were summarized into tables and mailed to the AIDS program 
directors for verification and updates in April, 1996. Updates and any additional 
information received during the verification process were added to the final tables used 
in this paper. 
Incidence of AIDS 

The incidence of AIDS and HIV infection varies widely among the states. Since 
the focus of this paper is the implementation of HIV consortia programs funded by 
Title II during 1995, state-level AIDS rates per 100,000 population for 1995 were used 
to put state-level policies for Title II consortia into the context of the incidence of AIDS. 
The map for male adults/adolescent AIDS annual rates was used for this study to 
present the incidence of AIDS throughout the United States, with each state assigned 
to one of our four AIDS-incidence categories.^° To illustrate the incidence of AIDS 
throughout the United States, the states were classified according to reported cases: 
highest incidence of AIDS (75 or more AIDS cases per 100,000 population); high 
incidence (50 to 74.9 AIDS cases per 100,000 population); medium incidence (25 to 
49.9 AIDS cases per 100,000 population) or low incidence (0 to 24.9 AIDS cases per 
100,000 population). Table 2-1 summarizes the categorization of the states by the 
incidence of AIDS. 

12 



Table 2-1: 

Categorization of the States by AIDS Incidence Rates for Males (1995) 



LOW INCIDENCE (Less than 25.0 cases per 100,000 population): Alaska, Arkansas, 
Idaho, Iowa, Indiana, Kentucky, Maine, Minnesota, Montana, Nebraska, New 
Hampshire, New Mexico, North Dakota, Ohio, Oklahoma, South Dakota, Utah, 
Vermont, West Virginia, Wisconsin, and Wyoming. 



MEDIUM INCIDENCE (25 - 49.9 cases per 100,000 population): Alabama, Arizona, 
Colorado, Illinois, Kansas, Massachusetts, Michigan, Mississippi, Missouri, North 
Carolina, Oregon, Pennsylvania, Rhode Island, Tennessee, Virginia, and Washington. 



HIGH INCIDENCE (50 - 74.9 cases per 100,000 population): Georgia, Hawaii, 
Louisiana, Nevada, South Carolina, and Texas. 



HIGHEST INCIDENCE (75 and over cases per 100,000 population): California, 
Connecticut, Delaware, District of Columbia, Florida, Maryland, New Jersey, and New 
York. 



13 



Survey Results: HIV Consortia Characteristics 

Within broad guidelines specified in the CARE Act, the states were given 
flexibility in determining the number of consortia to create and the geographic areas of 
the states each would serve, although states were required to balance the service 
needs of areas with high and increasing incidence of HIV with the service needs of 
rural areas. The survey of the AIDS program directors asked how many Title II HIV 
consortia operated within their states during 1995. As Table 2-2 illustrates, the number 
of consortia ranged from one in a number of states to as high as 44 in California. The 
questionnaire also asked how the number of Title II HIV consortia operating during 
1995 compared to the number operating during 1994. As Table 2-2 presents, almost 
all states reported that the number of HIV consortia operating during 1995 either 
remained the same or increased when compared to 1994. In addition, the 
questionnaire asked the AIDS program directors to estimate how the number of HIV 
consortia expected to operate in 1996 compared to the number operating in 1995. All 
states reported that the number of Title II HIV Consortia was expected to remain the 
same in 1996. (Given the consistency of responses, these 1996/1995 comparison data 
are not reported in Table 2-2). 

The questionnaire asked if any Title II HIV consortia served rural areas during 
1995, with all states responding yes. The District of Columbia responded that there 
are no rural areas within its jurisdiction. Nevada reported that the one consortium in 
the state "has three sub-coalitions that address major metro and rural areas." The 
AIDS program director in Tennessee noted that four of the five HIV consortia in that 
state "cover primarily rural areas." 



14 



Table 2-2 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia Characteristics 





ThA Miimhpr nf Hl\/ 

1 lie INUIIIUCl Ul illV 

Consortia During 

i QQ^ vA/sc 
1 v7v7^ Wad. 


1 wjs i>iuiiiuci ui niv 

Consortia in 1995 


Priorities for HIV Consortia 

\A/oro ^cfsHlichoH at* 
VVCIC ColaUllollcU dL. 


Alabama 


8 


increased in 1995 


local level 


Alaska 


3 


remained the same 


local level 


Arizona 


5 


decreased in 1995 


local level 


Arkansas 


5 


remained the same 


local level 


California'^ 


44 


increased in 1995 


local level 


Colorado 


5 


remained the same 


state level 


oonneciicul 


Q 


lll^lcdacu III 1 9\7U 


oldLc dllU IcyiUlldl level 


L/ClaWal 


1 

1 


ic^iiiciiiicu 11 ic adiiic? 


dldie level 


uisinci OT 
Columbia'^ 


1 


rcmdineu ine Sdme 


\J.\^. IS DOin Sidle dflQ 

local level." 


Florida'^ 


12 


remained the same 


local level 


Georgia 


16 


remained the same 


local level 


Hawaii 


1 


remained the same 


state level 


Idaho 


4 


increased in 1995 


local level 


Illinois 


11 


increased in 1995 


local level 


Indiana 


Indiana provides medical a 


nd support service with its Title 1 


program but not through consortia. 


Iowa 


4 


remained the same 


state and local level 


Kansas 


1 


remained the same 


state level 


Kentucky 


Kentucky does not p 


rovide consortia with its Title II p 


rogram but may in the future. 


Louisiana 


9 


remained the same 


local level 


Maine 


Maine d 


oes not provide consortia with its 


Title II program. 


Maryland'^ 


5 


remained the same 


local level 




21 

*prioritiz( 
prioritize which su 


increased in 1995 
» support services through conso 
pport services and how to implen 


Slale dllu lOCdl level 

rtia at state level; 

"^onf thorn at tho Ia^^I IowoI 


Michigan 


8 


remained the same 


local level 


Minnesota 


Minnesota does not provide consortia with 
1 


its Title II program. 
1 


Mississippi 


Mississipp 


i does not provide consortia with 


its Title II program. 


Missouri 


3 


remained the same 


state and local level 



15 



Table 2-2 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia Characteristics 





The Number of HIV 
Consortia During 
1995 was: 


The Number of HIV 
Consortia in 1995 
Compared to 1994 


During 1995 Service 
Priorities for HIV Consortia 
Were Established at: 


Montana 


5 


remained the same 


local level 


Nebraska 


1 - statewide 
4 - regional 


remained the same 


local level 


Nevada 


1** 

** The consortium in Neve 


remained the same 
da "has 3 sub-coalitions that adc 


state and local level 
ress major metro and rural areas." 


New Hampshire 


New Hampsf 


lire does not provide consortia w 


th its Title II program. 


New Jersey'^ 


9 


remained the same 


local level 


New Mexico 


New Mexic 


does not provide consortia with 


its Title II program. 


New York'^ 


17 


increased in 1995 


local level 


North Carolina 


15 


remained the same 


local level 


North Dakota 


10 


remained the same 


state level 


Ohio 


9 


remained the same 


local level 


Okiahonna 


2 


increased in 1995 


state and local level 


Oregon 


8 


remained the same 


local level 


Pennsylvania 


7 


remained the same 


state and local level 


Rhode Island 


no respons 


e to the survey 




South Carolina 


9 


remained the same 


local level 


South Dakota 


South Dako 


ta does not provide consortia wit 


1 its Title II program. 


Tennessee 


5 


remained the same 


local level 


Texas 


26 


remained the same 


local level 


Utah 


1- statewide 


remained the same 


state and local level 


Vermont 


1 

"Consortium has $30,C 


remained the same 
00 budget, allowing it to serve as 
not direct provider of servic 


state level 
> a coordinating, planning body, 
;es." 


Virginia 


5 


remained the same 


local level 


Washington 


17 


increased in 1995 


local level 


West Virginia 


1 


remained the same 


local level 


Wisconsin 


9 


remained the same 


state and local level 


Wyoming 


"No true consortia in Wyoming. Our best effort has produced only a network. The lead agency is 
the Health Department. We pay the bills individually as they are forwarded by case managers." 



^States with the highest incidence of AIDS. 



Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Financing Administration. U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



16 



The CARE Act allowed flexibility to establish service priorities for the Title II HIV 
consortia at either the state, regional or local levels. The questionnaire asked at 
which of these levels were sen/ice priorities of consortia established during 1995, with 
the questionnaire providing the following options for responses: state level, local level, 
other (please describe). As Table 2-2 documents, most states responded that 
services priorities for Title II HIV consortia were established at the local level during 
1995. 

Survey Results: HIV Consortia Services 

The CARE Act specifies that HIV consortia coordinate a continuum of outpatient 
health and related support services. Given the flexibility the CARE Act gives to the 
state Title II programs to establish services priorities (see Table 2-2), the questionnaire 
asked the AIDS program directors to provide the services offered by HIV consortia 
during 1995. To facilitate responses, the questionnaire offered a listing of 20 medical 
and support services along with a response of "other (please describe)," with a 
request to circle any that apply. The 20 medical and support services listed on the 
questionnaire are: 



medical care 
mental health counseling 
homemaker services 
hospice care 
home-delivered meals 
HIV support groups 
personal care 



nursing care 

substance abuse services 
adult day care 
transportation services 
case managers 
child care services 
podiatry services 



dental care 

home health services 

respite care 

benefits advocacy 

housing referrals 

legal services 

other (please describe): 



The medical and support services provided by the Title II HIV consortia in the 
states and the District of Columbia are summarized in Table 2-3. In addition to the 20 



17 



Table 2-3 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia Services 







The Most Effective Consortia 
Services that Meet the Health Care 
Needs of People vnth HIV: 




The HIV Consortia Services Funded by Title II in 1995: 


Alabama 


medical care, mental health courtseling, home-delivered meals, HIV support groups, 
personal care, nursing care, transportation services, case managers, dental care, 
home health services, respite care, housing referrals, legal services, nutrition 
supplements, medications, and financial assistance 


case management and medical 
and personal care 


Alaska 


payment for medical care, merrtal health courtseling, home-delivered meals, HIV support 
groups, transportation services, case managers, dental care, and benefits advocacy 


case management 


Arizona 


medical care, mental health counseling, homemaker services, HIV support groups, personal 
care, nursing care, transportation services, case managers, dental care, home health services, 
respite care, benefits advocacy, housirig referrals, legal services, nutritional assessmerrts, 
nutritional supplements, medications (not on state program), and durable medical equipment 


primary medical care, dental care, 
and home health services 


Arkansas 


medical care, mental health counseling, substance abuse services, 
transportation services, case managers, dental care, benefits advocacy, 
housing referrals, legal services, and direct financial assistance 


case management 


California'^ 


Varies among the 44 consortia. 'Collectively all if not most services are covered by consortia.* 


no answer 


Colorado 


medical care, mental health counseling, homemaker services, hospice care, home-delivered 

meals, HIV support groups, personal care, nursing care. sut>stance at>use services, 
transportation services, case managers, dental care, home health services, and respite care 


'Primary medical care and dental care 
[are] availat>le to clients via voucher 
programs and emergency 
financial assistance' 


Connecticut* 


medical care, mental health counseling, homemaker services, home-delivered meals, 
HIV support groups, personal care, substance abuse services, transportation services, 
case managers, chikl care services, podiatry services, dental care, home health services, 
respite care, benefits advocacy, housing referrals, and legal services 


case management services, transpor- 
tation, services, client special care fund, 
and primary health care fund 


Delaware* 


mental health counseling, home-delivered meals fmeals on site*), HIV support groups, 
sut>stance abuse services, transportation services, case managers, child care services, 
support sennces. buddy services, congregate meals, food bank, and nutritionist services 
transportation, HIV support groups, and complementary therapies. 


HIV support groups, buddy programs, 
transportation, and support 


District of 
Columbia* 


case managers, housing referrals, home care coordination 


(#1) AIDS Drug Assistance Program 
(#2) case management services 


Florida* 


medKal care, mental health counselirtg. homemaker servKes, hospice care (in home), home- 
delivered meals. HIV support groups, personal care, nursing care, substance atnise services, 
transportation services, case managers, podiatry services, dental care, home health services, 
respite care, benefits advocacy, housing referrals (case mgt.), pharmaceuticals, child care 


'A single service cannot bo identified as 
such. It is tfie continuum of care that 
makes Title II effective - tfie broad array 
of services covered [in Floridar. 


Georgia 


medical care, mental health counseling, hospice care, HfV support groups, nursing care, 
suttstance atxise services, transportation services, case managers, dental care, 
home health services, benefits advocacy, and housing referrals 


medical services 


Hawaii 


medical care, mental health counseling, homemaker sen/ices, hospice care, home-delivered 
meals, HIV support groups, personal care, nursing care, substance abuse services, adult 

day care, transportation services, case managers, chikJ care, podiatry services, dental care, 
home health services, respite care, benefits advocacy, housing refenals, and legal services 


no answer 


Idaho 


medical care, mental health counseling, homemaker services, hospice care, home-delivered 
meals, HIV support groups, personal care, nursing care, substance abuse services, adult 
day care, transportation services, case managers, chikJ care, podiatry services, dental care, 
home fiealth services, respite care, (depending on the consortia) 


direct medical care 


Illinois 


medical care, mental health counseling, homemaker services, home-delivered meals, 
HIV support groups, substance abuse services, transportation services, case managers, 
child care services, dental care, home health servKes, t>enefits advocacy, housing referrals, 
legal services, rent assistance, and assistance with telephone/utility bills 


no answer 


IrKliana 


IrKliana provides medical and support senrice with its Title II program tnit r 


rat through consortia. 


Iowa 


mental health counseling, home-delivered meals, HIV support groups, personal care, 
transportation services, case managers, dental care, benefits advocacy, 
medical care, buddy services, housing referrals, and legal services 


case management drug assistarKe. 
housing assistance, and emergency 
financial services 


Kansas 


medk:al care, nrantal health courtseling. homemaker services, hospice care. 
HIV support groups, personal care, nursing care, substance abuse services. aduK day care, 
transportation services, case managers, dental care, home health services, 
respite care, and housing referrals 


case management ar>d 
drug reimbursement 


Kentuclcy 


Kentucky does not provide consortia with its Title II program but may in the future. 



18 



Table 2-3 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1 995: 
HIV Consortia Services 







The Most Effective Cortsortia 
ServKes that Meet the Health Care 
Needs of People with HIV: 




The HIV Consortia Services Funded by Title II in 1995: 


Louisiana 


emergency assistance, legal advocacy, volunteer services, case management, 
transportation, and food pantry 


all 


Maine 


Maine does not provide consortia with its Title II prograi 


n. 


Maryland* 


medical care, mental health counseling, home^ivered meals, HIV support 
groups, substance atnise services, transportation services, case managers, 
child care services, dental care, respite care, t)enefits advocacy, and legal services 


primary care 


Massachusetts 


mental health counseling, home^ivered meals, HIV support groups, personal care, 
sutistance abuse services, adult day care, transportation services, case managers, 
child care services, respite care, benefits advocacy, housing referrals, and legal services 


r>o answer 


Michigan 


medical care, mental health counseling, homemaker services, home-delivered meals, HIV 
support groups, persortal care, nursing care, sut>stance atxise services, tiansportcition services, 
case managers, dental care, home health services, respite care, and benefits advocacy 


case management 


Minnesota 


Minnesota does r)ot provide corfsortia with its Title II program. 


Mississippi 


Mississippi does not provide consortia with its Title II pros 


ram. 


Missouri 


medical care, mental health counseling, homemaker services, HIV support groups, 
personal care, nursing care, substarfce at>use servKes, transportation services. 

RsiCA mananarc HAntsil ^arA IwfiA Knaith catvw^a^ hnnAfitQ aHx/rv^fw^ Koii^nn rafArralc 

nutrition supplements, and chiropractic service 


service coordination, home health, 
and medications 


Montana 


medical care, mental health counseling, substance abuse services, case managers, 
dental care, and pharmaceuticals not covered by drug assistartce program 


case management, pharmaceuticals, 
and medical care 


Net>raska 


medical care, mental health counseling, transportation services, case managers, 
dental care, home health services, arKi housing assistance 


medk^al and dental care 
and housing assistance 


Nevada 


medical care, mental health counseling, homemaker services, home-delivered meals, HIV 
support groups, personal care, substance abuse services, adult day care, transportatkx) 
services, case ntanagers, dental care, home health services, respite care, t>enefits advocacy, 

housing refenals, legal services, hospital visitation, housing assistance subsidies, 
emergency financial assistance, nutritional supplements & counseling, and translation services 


transportation, nutritk>nal supplements, 
housing assistance, support groups, 
counseling servKes, arKl 
case management 


New Hampshire 


New Hampshire does not provkle consortia with Its Title II program. 




New Jersey* 


medical care, mental health counseling, hospne care, home-delivered nteals 
HIV support groups, personal care, nursing care, sut>stance abuse services, 
transportation services, case managers, chikl care services, dental care, 
respite care, benefits advocacy, housing referrals, and legal servKes 


*HIV early interventk>n sennces in 
various clinical settings, I.e.. hospitals, 
k>cal health departments, federally- 
funded primary care centers and 
drug treatment centers.' 


New Mexico 


New MexKO does not provide consortia with its Title II proi 


iram. 


NewYort<* 


medical care, mental health counseling, homemaker services, home-delivered meals, HIV 
support groups, personal care, substance abuse servnes, adult day care, transportation 
services, case managers, dental care, benefits advocacy, housing referrals, 
legal services, and informatkm and referral 


HIV primary care, dental care 
medVpharm., home care, day 
health care, mental health services, 
case management, nutrition/food, 
sut>stance abuse services, transportatk>n 


North Carodna 


medical care, mental health counseling, homemaker services, hospice care, home-delivered 
meals, HIV support groups, personal care, nursing care, substance abuse sennces, adult 
day care, transportation services, case managers, chihd care, podiatry services, dental care, 
home health services, respite care, t>enefits advocacy, housing referrals, and legal services 


case management in-home care, 
and transportation 


North Dakota 


medical care, mental health counseling, persoruil care, nursing care, case ntanagers, 
podiatry services, dental care, home health services, and respite care 


drug reimbursement 


Ohio 


medical care, mental health counseling, homemaker services, hospice care, 
home-delivered meals, housing assistarKe, nursing care, substance abuse services, 
transportation services, child care, dental care, home health services, 
respite care, housing referrals, legal services, chiki welfare and femily 
services, nutrition, rehabilitation services, and diagnostic and monitoring 


homemaker. home health aide, 
housing assistance, and 
nutritk>n assistance 



19 



Table 2-3 

HIV Consortia Fundod by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia Seivicas 







1 IW nflVdi ^llt^UW V^Vll^VlUa 

Services that Meet the Health Care 

Mmm4< nf PaarIa u/ith HIV* 
i^vHTUd wi i^wf^o mill niv* 






Oklahoma 


medical care, mental health counseling. HIV support groups, transportation services, 
case managers, dental care, ben^its advocacy, housing referrals, 
nutritional care, outreach services, and information & referrals 


case management 


OroQon 


ineuicai care, meruai neaiui counseling, ii09pice care ^ie9iaeiiijai^, rmrnv-cwiiveieu irmais, 
HIV support groups, personal care, nursing care, sut>stance aixise services, 
aduK day care, transportation services, case managers, dental care, respite care, 
benefits advocacy, housing referrals, adoption/fbster care, and t>uddy/companion services 


rneaicai care, case managenieni, 
counseling, and client advocacy 


~tn IlloyiVallla 


m^v^if^l carA nukntstl KasMi fwincAlinn Knorw^o t^ra Ml\/ cimrwf firMin*^ niiroiivi f^rck 

IIRKJIVidll Mil Of IIWI lull IRMIIUI bUUI IdQIIIiy, in/d^/lWV balO, 111 V dU|^^ini \^l VU^/^* llUldll ly MllO, 

sut>stance abuse services, transportation services, case managers, home health services, 
benefits advocacy, legal services, and emergency assistance 


lllalla^ollloi 11 90IVIM^> 


RhnHA i<danH 
rxiiwUo KHciilu 


iiu loo^wiiao uj UKf MJiwy 






ntAHii^l rarA mAnial hAfttth nuiiKAlinn hnmAmalfAr ^An/v^A*!^ Kmvw^^Aln/AFAH mA£il<£ 

iiim4n«Cll %«4BIO| IIRnilal IRKIIUI t^^UI I9VIII I 1 IVI IRniMliVOI 9V1Vn«V^>( 1 IMIIV^JOIIVdVMJ IliOCII^, 

HIV support groups, persorial care. nursir)g care, substance abuse services, adult 
day care, transportation services, case managers, dental care, home health services, 
respite care, benefits advocacy, housing referrals, and legal services 


ffTiAHiml f^FA /*MinA fu itngtiAnt 

flnMJn«al vaiO ^ I^IIRV VU^MIUVIIl 

clinics have been established in 
South Carolina with Title II funds.*) 




5^Ai ith r^aitf&sk H/WK nf^ nr/>\/irlA rwt^Artia with ifQ TiHa II ivn 




Tennessee 


limitad medical care, mental health counseling, homemaker services, hospice care, 

nATQAnsil f^strtk niircirm f^rtk ^ihKfnnmh siKiica CAn/if^A^ aHiitt tism nurtk 

Ml \0Ol 0| 1 lUIMI Wof tJ, 9UV9Cal 1^^ clUUdO 9cn Vi^^^>, CBUUIt Uciy balo, 

transportation services, case martagers, child care, dental care, home health services, 
respite care, benefits advocacy, and nutritional services 


case management in rural areas, 

ni itriti/visil CAtvif^A^ 9nH fiskv f^rA 


Texas 


medical care, mental health counseling, homemaker services, hospice care, home-delivered 

mAftlQ Ml\/ dinrwt or/uinc nAfcnna! f^rA niiroinn rstm ^iKctniv^ siKika CAn/i/^A< nHiiH 
iiipciio, ni V 9U^|^/i I yi wU)/d, ^iMti ^viiai bdit?^ iiui9iii^ baiOf oui^dtaii^o ouudo 901 VIW09, ouuii 

day care, transportation services, case managers, child care, podiatry services, dental care, 
home health services, respite care, t)enefits advocacy, housing referrals, and legal services 


health insurance continuation 


Utah 


mental health counseling, substance abuse services, transportation services, case managers, 

ediication hAUsino nutrition dantal csfa hAnAfit^ arivM^arv lAnal ^Arvii^^ 

medications, and vision care 


dental, lab. and mental health 


Vermont 


'Consortium has $30,000 txidg^ allowing it to serve as a coordinating, planning bod 


r, not direct provider of services.* 


Virginia 


medical care, mental health counseling, hospice care. home<leiivered meals, 
HIV support groups, personal care, nursing care, substance at>use services, 
transportation services, case managers, child care, dental care, home health services, 
respite care, benefits advocacy, housing referrals, and legal services 


primary medical care 


Washington 


medical care, mental health counseling, homemaker services, hospice care, home- 
delivered meals, HIV support groups, aduK day care, transportation services, case 
managers, child care services, dental care, and housing referrals 


no answer 


West Virginia 


medical care, mental health counseling, homemaker services, hospice care, home-delivered 
meals, personal care, nursing care, transportation services, case managers, child care, 
dental care, home health services, respite care, benefits advocacy, 
housing referrals, and legal services 


medications not covered by 
the Title II drug assistance program 


Wisconsin 


medical care, mental health counseling, homemaker services, home-delivered meals. 
HIV support groups, personal care, substance abuse services, transportation services, 
case managers, chiM care, dental care, home health services, respite care, 
tienefits advocacy, housing referrals, and legal services 


case management housing, 
and HIV earty intervention 


Wyoming 


*No true consortia in Wyoming. Our best effort has produced only a network. The lead agency is ttte Health Department 
We pay the bills as they are forwarded by case managers.* 


*States with the highest incidence of AIDS. 


Source: RobertJ. Buchanan. Ph.D.. Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators, Title II of the R^n White CARE Act This research was funded by a grant from the 
Health Care Financing Administration. U.S. Department of Health and Human Services (grant # 1&-P-90286^-01). 



20 



medical and support services provided on the questionnaire, a number of states 
reported coverage of other consortia services. Among these other medical and 
support services provided by HIV consortia during 1995 were: nutrition supplements 
and counseling, medications, financial assistance, durable medical equipment, 
buddy/companion services, home care coordination, child care, assistance with rent 
and utilities bills, chiropractic services, translation services, outreach services, 
information referrals, adoption/foster care, lab services, and vision care. 

The questionnaire also asked the AIDS program directors of all the services 
provided by HIV consortia in their states during 1995, to "list the most effective of 
meeting the health care needs of people with HIV." Table 2-3 presents the responses. 
Among the effective consortia services mentioned most often are: case management, 
primary medical care, drugs/medication, dental care, and home care. However, as 
the response from Florida summarized: "a single service cannot be identified as [most 
effective]. It is the continuum of care that makes Title II effective - the broad array of 
services covered [in Florida]." The services identified in Table 2-3 offer examples to 
the HIV consortia funded by Title II of the broad array of medical and support 
services that comprise the continuum of care needed by people with HIV illness. 
Survey Results: Title II Beneficiaries and Eligibility Policies 

The CARE Act did not establish income restrictions for individuals to receive 
benefits from Title II programs, although the statute did specify that CARE Act 
programs must be the payer of last resort.^* Given the absence of federally-set 
income standards for eligibility, the states have the ability to establish there own 
financial eligibly criteria for individuals to receive Title II benefits. The survey asked the 
AIDS program directors to provide: the number of people receiving benefits from HIV 

21 



consortia; medical and financial eligibility criteria for HIV consortia; spend down 
procedures for eligibility; and any use of waiting lists. 
People Receiving HIV Consortia Benefits 

The questionnaire asked the AIDS program directors to estimate at the time of 
the survey (mid 1995) the number of people receiving benefits from HIV consortia 
funded by Title II, with these estimates presented in Table 2-4. The questionnaire also 
asked the AIDS program directors to estimate how the number of people receiving HIV 
consortia benefits in 1995 compared to the number of people receiving these benefits 
in 1994. All of the states (and the District of Columbia) responding to survey reported 
that the number of beneficiaries increased in 1995 except for six states. Alaska, 
Montana, Vermont'', and Virginia reported that the number of beneficiaries remained 
the same. New Jersey reported the number of beneficiaries decreased in 1995, and 
Michigan reported that these data were not available. (Given the similarity of 
responses from most states, these data are not reported in Table 2-4.) In addition, 
the questionnaire asked the AIDS program directors to estimate how the number of 
people receiving consortia benefits in 1995 compared to the number of people 
expected to receive these benefits during 1996. All of the states (and the District of 
Columbia) reported that the number of beneficiaries expected to receive HIV consortia 
benefits will increase in 1996, except for Arizona, California (if funding is stable), 
Montana, Utah (probably), and Washington state which expect the number of 
beneficiaries to remain the same during 1996. (Again, these data are not reported in 

'Vermont reported tliat there were no beneficiaries receiving benefits from 
HIV consortia funded by Title II during 1995. The survey response from Vermont 
included that the "consortium has a $30,000 budget, allowing it to serve as a 
coordinating, planning body, not a direct provider of services." 



22 



Table 2-4 

HIV Consortia Funded by Tttle II of the Ryan White CARE Act during 1995: 
Beneficiaries and Eligibility Policies 





Estimates of the Number of 
People Receiving Benefits 
From HIV Consortia Funded 
by the Title 11 Program: 










To be Financially Eligible for HIV 
Consortia. Gross Monthly Income 
during 1995 Cannot Exceed: 


Compared to 1 993, 
Financial Eligibility 

Criteria for 
HIV Consortia in 
1995 Became: 




Medical 
Eligibility 
Requirements 
for HIV Consortia 


Do HIV Consortia 
Eligibility [determination 
Procedures Irtclude 
Spend Down? 


1995 


1995 Compared 
to 1994 


1 -Person 
Household 


4-Person 
Household 


Alabama 


700 


increased in 1995 


HIV+ 


no income 
requirements 


no income 
requirements 


not applicable 


not applicable 


Alaska 


200 


remained the 
same 


HIV+ 


rK)t specified - 
"low income" 


not specified - 
"low income" 


more restrictive in 1995 


no 


Arizona 


1.500 


irtcreased in 1995 


HIV+ 


no income 
standard 


no irKome 
standard 


remained the same 


no 


Arionsas 


1.155 


increased in 1995 


HIV+ 


$12.580Vear 


$25,520/year 


remained the same 


yes 


California'^ 


27.430 
(estimate) 


increased in 1995 






• 


varies among the 
44 consortia and the 
services funded 


no answer 


"Minimum requirement: individuals or family members of individuals with HIV/AIDS; other requirements may 
vary among ttie 44 corfsortia. Rnancial eligibility criteria vaiy among the 44 consortia and the services funded * 


Colorado 


4,000 


increased in 1995 


HIV+; consortia may 
requireT-Cells <300 


varies with 
service** 


varies with 
service** 


less restrictive in 1995 


varies with 
service** 


"Indivklual income levels 'can vary from $600/mc 
for a femity of 4] for the insurance continuation | 


>nth [$1 .200/month for a family of 4] for the food bank to $1 ,840/month [$3,700/month 
jrogram* There is spend down for the food bank tHJt not for the insurance program. 


Connecticut* 


1.150 


increased in 1995 


HIV+ 


$1,245/month | $2.525/month 
(200% of poverty leveO 


less restrictive in 1995 


yes 


Delaware* 


705 


increased in 1995 


HIV+ 


$613.33/month 


$2,281/month 


more restrictive in 1 995 


no 


District of 
Columbia* 


1.282 


ir)creased in 1995 


HIV. AIDS, or 
related illness 


ail income 
levels served 


all income 
levels served 


remairted the same 


not appricat>le 


Florida* 


12,641 


increased in 1995 


HIV+ 


Each consortium sets eligibility for 
their respective areas 


remained ttte same 


Each consortium sets 
eligibility for their area 


Georgia 


4,000 


increased in 1995 


diagrxtsis of HIV 
disease 


185% of federal 
poverty level 


185% of federal 
poverty level 


remained the same 


yes 


Hawaii 


570 


increased in 1995 


HIV+ 


300% of 
poverty level 


300% of 
poverty level 


remained the same 


no 


Idaho 


100 


increased in 1995 


HIV+ & CD4<500 


400% of 
poverty level 


400% of 
poverty level 


remained ttie same 


no 


Illinois 


4,000 


increased in 1995 


HIV+orAIDS 


$14,940/year 


$30,300/year 


remained the same 


no 


Indiana 




Indiana 


srovides medical and 


support services vt 


nth its Title II progra 


m but not through conso 


rtia. 


Iowa 


644 


increased in 1995 


HIV+ 


$1,246/month 


$2.525/month 


remained the same 


no 


Kansas 


200 


increased in 1995 


HIV+ 


S1.840/month 


$3,700/month 


less restrictive in 1995 


no 


Kentucky 




if 


(entucky does rxit pro 


i^de consortia with 


its Title II program 


)ut may in the future. 




Louisiana 


3,500 


increased in 1 995 


HIV+ 


200% of 
poverty level 


200% of 
poverty level 


stat>le 


no 


Maine 






Maine doe 


s not provide consortia with its Title II 
1 


urogram. 




Maryland* 


4,866 


increased in 1995 


HIV+ 


State sliding scale fee, but rto one 
denied service for inability to pay. 


remained the same 


yes 


Massachusetts 


4,000 


increased in 1995 


HIV+ 


no income 
requirements 


no income 
requirements 


no ir)come 
requirements 


not applicat>le 


Michigan 


4.000 


data not 
available 


all HIV-t- eligible 


no income 
requirements 


no income 
requirements 


nwre restrictive since 
1992 with DAP 


no 


Minnesota 


Minnesota does not provide consortia its Title II program. 
1 1 1 1 1 1 


Mississippi 






Mississippi d 


oes not provide cc 


msortia with its Title 


II program. 




Missouri 


1.471 


increased in 1995 


HIV+ 


$2,500/month 


$5,000/month 


less restrictive in 1995 


no 


Montana 


75 


remained the 
same 


HIV+. CD4<500 


$623/month 
(for full coverage) 


$1.263/month 
(for full coverage) 


remairted the same 


no 


Nebraska 


183 


increased in 1995 


HIV+ 


$1,245/month 


$15,480/year 


remained the same 


yes 



23 



Table 2-4 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
Bencrfictaries and Eligibility Policies 





Estimates of the Number of 
People Receiving Ber>efrts 
From HIV Consortia Funded 
by the Title II Program: 










To be FinarKially Eligible for HIV 
Consortia, Gross Monthly Income 
during 1995 Cannot Exceed: 


Compared to 1993, 
Financial Eligibility 

Criteria for 
HIV Consortia in 
1995 Became: 




Medical 
Eligibility 
Requirements 
for HIV Consortia 


Do HIV Consortia 
Eligit>ility Detennination 
Procedures Include 
Spend Down? 


1995 


1995 Compared 
to 1994 


1 -Person 
Household 


4-Person 
Household 


Nevada 


2,600 
***The' 


increased in 1995 
significant other or 


HIV+*" 
amily member of pers 


on with HIV is cov 


ered. Financial eli£ 


remained the same 
libility criteria are determ 


yes*** 

ned by k>cal providers. 


New Hampshire 






New Hampshire does not provide consorta with its Title II program. 


New Jersey* 


11.314 


deceased in 1995 
(reporting change) 


HIV+~ 


~ 1 ~ 1 remained the same | no 


~ln addition to HIV-*-, the patient must 'need medical care, have no other (or inadequate) coverage and reskie* in the area of 
the consortium. The consortia do not set 'upper limits' for financial eligibility. 'If a provider charges for services, their slkiing scale fee 
... should not exceed certain proportional maximums relative to clients' income and federally established poverty levels.* 


New Mexico 






New Mexico c 


loes not provkle consortia with its Title 
1 


> II program. 




New York* 


70,000~ 


increased in 1995 


HIV-i- (and families 
for some service) 


There are no financial eligibility 
requirements for consortia benefits 


remained the same 


no 


— unduplicated count includes approximately 125,000 people reached through information and outreach services 


North Carolina 


3.000 


increased in 1995 


HIV+ or family 
member 


Sliding scale 


reimbursement 


remained the same 


yes 


North Dakota 


12 


increased in 1995 


no answer 


no income 
requirements 


no income 
requirements 


less restrictive in 1995 


no 


Ohio 


2.700 


increased in 1995 


HIV+ 


$1.374/nK)nth 


$3,435/month 


remained the same 


yes 


Oklahoma 


500 


increased in 1995 


no answer 


Documented gross income at or 
below 150% of federal poverty level 


more restrictive in 1995 


yes 


Oregon 


3,000 


inaeased in 1995 


HIV+ 


$1,441/month 


$2,898/month 


remained the same 


no 


Pennsylvania 


4,591 


increased in 1995 


need service arKi 
rto other coverage 


no income 
requirements 


no income 
requirements 


no income 
requirements 


no 


Rhode Island 


rM respc 


mse to the survey 












South Carolina 


2.500 


increased in 1995 


HIV+ 


"Local consortia make their own deciskxis on financial 
requirements, other than patient cannot have another payment 
source. Most patients in S.C. are at '0* income." 


oouin uaKota 


1 


South Dakota 


does not provkie consortia with its Title II program. 

1 1 1 


Tennessee 


Consortia not operatk>nal 
until December. 1994; in 
1995 3,0004- received 
consortia services. 


HIV+ 




No financial requii 


ements have been estab 


lished 


Texas 


8.000 


increased in 1995 


HIV+ 


no income 
requirements 


no income 
requirements 


no income 
requirements 


not applk:able 


Utah 


455 


increased in 1995 


HlV+or 

family member 


No income limits; 
sliding scale fee may be imposed 


remained tfie same 


no 


Vermont 


0- 


remained the sam 


not applicable 


not applicable — | rwt applicable 


not applicable 


not applicat>le 


"Consortium has $30,000 budget, allowing it to serve as a coordinating, planning body, rwt direct provider of services." 


Virginia 


2.000 


remained the 
same 


HIV+ 


$1,245/month 


$2,525/month 


remained the same 


no 


Washington 


1,600 


increased in 1995 


HIV+ (Tor some 
services: caregivers 
and k>ved ones") 


No 


financial eligibility : 


standards 


no 


West Virginia 


425 


increased in 1995 


HIV+ 


$1,300/month 


$5,200/nK>nth 


remaii>ed the same 


no 


Wisconsin 


500-700 


increased in 1995 


HIV+ & depends on 
scope & type service 


depends ^on service 


remained the same 


no 


Wyoming 


"No true consortia in Wyomir>g. Our best effort has produced only a network. The lead agency is the 
Health Department We p>ay the bills individually as they are forwarded by case managers." 


*States with the highest incidence of AIDS. 


Source: Robert J. Buchanan. Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the R^n White CARE Act This research was funded by a grant from the 
Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant* 18-P-90286/5-01). 



24 



Table 2-4 due to the similarity of responses from the states.) 
Medical Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide medical 
eligibility requirements for people to receive benefits from HIV consortia funded by Title 
II during 1995. As the Table 2-4 illustrates, most states responded that the individual 
must be HIV positive to meet medical eligibility requirements. In Montana and Idaho 
an individual must be infected with HIV and also have a CD4 count below 500, while in 
Colorado consortia may require a count below 300. In addition, California, Nevada, 
North Carolina, Utah, and Washington state (for some services) noted that family 
members or other people also may receive HIV consortia benefits (see Table 2-4 for 
the responses from these states). 
Income Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide the maximum 
monthly income level an individual in a one-person household could have during 1995 
to be eligible for HIV consortia services. In addition, the AIDS program directors were 
asked to provide the maximum monthly income a family of four could have during 
1995 for an individual within that family to be eligible for HIV consortia services. These 
financial eligibility requirements reported by the states are presented in Table 2-4. A 
number of states reported no income requirements for HIV infected people to receive 
benefits from HIV consortia funded by Title II. 

As Table 2-4 illustrates, even states that establish income ceilings for eligibility 
for services provided by HIV consortia set generous eligibility standards. This is 
particularly noticeable if income eligibility standards for benefits from HIV consortia 
funded by Title II are compared to income eligibility standards for state Medicaid 

25 



coverage (the largest payer of AIDS-related care.) For example, during 1993 most 
individuals with AIDS could not have incomes in excess of $434 per month to receive 
Medicaid coverage in most states.^^ Hence, HIV consortia funded by Title II can 
provide services to people infected with HIV who have incomes too high to become 
eligible for Medicaid coverage. The Title II programs strengthen the public-sector 
safety net for funding the care needed by people with HIV-related illness. 

The questionnaire asked if financial eligibility criteria for services provided by 
HIV consortia during 1995 have become more restrictive since 1993, providing 
responses of "more restrictive in 1995," less restrictive in 1995," or "remain the same." 
While financial eligibility for HIV consortia funded by Title II remained the same in most 
states, these criteria have changed in a number of states as Table 2-4 illustrates. The 
questionnaire also asked the AIDS program directors if they expected financial 
eligibility criteria for HIV consortia to become more restrictive during 1996. All the 
states (and the District of Columbia) responding to the survey that provided Title II 
consortia programs reported that financial eligibility criteria are expected to remain the 
same during 1996 except for five states.'^ Financial eligibility criteria for HIV consortia 
in Florida, Michigan, Missouri, and Nebraska are expected to become more restrictive 
in 1996 and less restrictive in North Carolina. (Given the similarity of responses from 
most states, these data for 1996 are not reported in Table 2-4.) 
Spend Down Procedures 

The questionnaire asked the AIDS program directors if eligibility determination 
procedures for benefits provided by HIV consortia funded by Title II include a spend 

*^ln addition, the Title II coordinators from California and South Carolina responded 
that local consortia establish their own financial eligibility criteria. 

26 



down provision. Spend down was defined on the questionnaire as "allowing the 
applicant to deduct the cost of medical care from income levels and using this 
medical-cost adjusted income level for eligibility determination." (Most state Medicaid 
programs allow spend down when determining Medicaid eligibility.^®) As Table 2-4 
documents, a number of states include spend down provisions in the determination of 
financial eligibility for benefits provided by HIV consortia funded by Title II. 
Waiting Lists 

The questionnaire asked if there was a waiting list of people in their state 
waiting to receive benefits from HIV consortia funded by Title II during 1995. If there 
was a waiting list, the AIDS program directors were asked to estimate both the 
number of people currently on the waiting list at the time of the survey and the number 
of days a person had to wait to receive benefits during 1995. Based on the survey 
responses, only the Title II program in Nevada (with the use of waiting list varying by 
provider and no statewide list) reported waiting lists for HIV consortia services. (Given 
the absence of reported waiting lists in all other states, these data are not reported in 
Table 2-4.) 

Coordination with i\1edicaid 

Although the CARE Act specifies that Title II funds must be the payer of last 
resort. Title II programs can supplement Medicaid coverage if Medicaid does not cover 
a needed health service or if a recipient's care needs exceed Medicaid utilization limits. 
The state Medicaid programs and Title II programs can coordinate services to provide 
a continuum of care and eliminate duplication of services, serving the care needs of 
people with HIV diseases more efficiently.^'^ ^® A study by the National Governor's 
Association (NGA) examined how the state Medicaid programs and programs funded 

27 



by Title II can coordinate to serve people with HIV and AIDS more effectively and 
efficiently.^® Among the areas of collaboration identified by the NGA study are: 
planning and implementing home care services; administering drug reimbursement 
and assistance programs; administering health insurance continuation programs; 
cross-training between CARE Act and Medicaid programs; sharing information and 
protecting client confidentiality; planning, administering and staffing case management 
services; collaborating through CARE Act program meetings (e.g., Title 11 statewide 
advisory committees); and outstationing Medicaid eligibility workers. 
Title ll/Medlcaid Utilization Limits 

The questionnaire asked the AIDS program directors if the Medicaid program in 
their state "limits utilization of outpatient and home-based care (e.g., 18 physician visits 
per year or 50 home health visits per year), do HIV consortia funded by Title II in your 
state cover the use of these services in excess of the Medicaid limits?" To facilitate 
responses, the questionnaire provide "yes," "no," and "no Medicaid utilization limits" as 
possible responses. As Table 2-5 documents, HIV consortia funded by Title II in many 
states did not cover needed services in excess of Medicaid utilization limits. 
Effective Title 11 /i\/ledicaid Coordination 

The questionnaire asked the AIDS program directors to "describe effective 
methods and policies for the coordination and integration of the Medicaid program 
with the Title II program in your state." As Table 2-5 indicates, many AIDS program 
directors reported that Medicaid representatives serve on Title II boards or 
committees, as well as conducting joint meetings on policy development and 



28 



Table 2-5 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia and Medicaid 





Do HIV Consortia Cover the Use 

of ServKes When Need 
Exceeds Any Medicaid Limits? 


Effective Methods and Pdrcies 
for the Coordination of Medk:aid and 
Title II of the Ryan White CARE Act 


Barriers to the Coordination and 
Integration of Medicaki and 
Title II of the Ryan White CARE Act 


Alabania 


no answer 


"A representative for Medk:aid sits on 
our advisory t)oard.' 


HCFA confidentiality requirennents 


Alaska 


no 


"Work cfosely with Medicaid to try to qualify 
clients. Dont cover any seivk» with Title II 
that Medicaid covers.* 


works o.k. 


Arizona 


yes 


no answer 


AHCCCS [Medk:akj] has numerous plans 
with different benefits. Determination of 
eligibility time-consuming and d'iffrcult.* 


Arkansas 


yes 


"All clients apply for MedicakI when enrolled 
in the consortia program. ... If eligible, the 
most expensive drugs needed are put on the 
Medicaid card* and Title II pays for the rest. 


not applicable 


California'^ 


no answer 


no answer 


no answer 


Colorado 


no Medkxiid utilizatkMi limits 


Informal interaction between Title II and 
Medicaid staffs; these staffs share many 
committee assignments. Title II insurance 
continuation program run by staff that 
administers Medicaid. 


"Distance is always a problem in outstate 
areas of Coforado. Travel time and lack of 

travel reimbursement prevent staff from 
meeting with Title II providers in committees 
and consortia meetings." 


Conrracticut* 


"It varies across providers." 


"We do rrot currently have these in place." 
("An HIV Medicaid managed care plan 
has been drafted.") 


"Programs are managed by different state 
agencies. There is rK> federal/state directive 
or mandate to facilitate this [coordination]." 


Delaware'^ 


no 


quarterly meetings and E-mail 


rK>ne 


District of 
Columbia* 


yes 


Medicaid database terminal provided at cost 
to prevent duplication of services and provkle 
case managers with Medicaki eligibility data. 


"The Medicaid applk^ation process is 
extremely time consuming and frustrating for 
many clients and case managers. Efforts to 
ensure that clients utilize MedrcakI are often 
unsuccessful because Title II servKes are 
more comprehensive and accessible. Also, 
service provklers [prefer Title II funding whk:h 
has a more] reliable payment schedule ..." 


Ftorida* 


yes ("As last resort, Title II 
will cover these services.") 


"Case management agencies throughout 
Fforida are key entry pcints for Title II services. 
Case managers assist clients in navigating 
and otitaining the appropriate services, like 
MedicakI. They also ensure Titie II is 
payor of last resort." 


"Administration of the MedicakI program is the 
responsibility of a separate state agency from 
the agency that is the Title II grantee. This 
situation makes coordination diffk:ult at times. 
But coordinated meetings and cross-training 
opportunities have been helpful." 


Georgia 


not applicable 


none mentioned 


none mentioned 


Hawaii 


no Medkxikj utilization limits 


"In addition to official coordination between 
the Hawaii State Department of Health and 
the Hawaii Medkaid program, staff from 

[Medkxiid] serves on the Ryan White 
consortium's board of directors and on the 
consortium's Ryan White Oversight Committee 


rK> answer to the question 


Idaho 


not sure 


"We are vrarking at improving coordination 
between state Medicaid and Ryan White." 


no answer to the question 


Illinois 


no 


"Indivkluals receiving Medk^id are not eligible 

for Title II funded servk^ unless they are 
non-Medicaid reimt>ursable. Case managers 
assist clients in determining MedicakI eligibility 

and applying for benefits. A [MedicakI] 
representative is seated on the Depaitmenf s 
Title II Advisory Committee." 


"The Medicaid program is administered 
by a different state agency." 



29 



Table 2-5 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia and Medicaid 





Do HIV Consortia Cover the Use 

of Services When Need 
Exceeds Any Medicaid Limits? 


Effective Methods and Polrctes 
for the CoordinatkKi of Medk^aid and 
Title II of the Ryan White CARE Act 


Barriers to the Coordinatk>n arKl 
IntegratkK) of Medicakl and 
Title II of the Ryan White CARE Act 


Indiana 


Indiana provkies 


medkal and support servKe with its Title II progr 


am but not through consortia. 


Iowa 


yes 


'Joirrt meetings on polk:y and coordinatk>n; 
developirtg policy together.* 


'Confklentiality - sharing informatkxi 
t>etween the two programs.* 


Kansas 


yes 


*This is not a problem. In a small state we tend 
to work together without a formal requirement.* 


no answer to the questkm 


Kentucky 


Kentucky 


does rwt provkJe consortia with its Title II progran 


1 but may in the future. 


Louisiana 


varies 


*Ryan White is the payer of last resort.* 


none mentk>ned 


Maine 




Maine does not provkie consortia vtnth its Title 1 


1 program. 


Maryland* 


'Only home-based care is limited; 
we cover servk»s in excess 
of limits." 


*MedKakj staff participate in Maryland AIDS 
Policy Workgroup; Title II vendors are required 
to be approved as Medkrakl provkiers and 
must bill [Medicakl] for covered servk:es; 
Title II staff also provide AIDS-related expen- 
diture analyses for Medk:aid, are devetoping 
a cooperative quality assurance program, 
arKi are working with Medicakl HMO staff in 
training and delivery issues.* 


none 




The use of appropriate consortia 
servk:es is allovrad if Medkxiki 
limits are encountered.* 


*Coordinatk>n between Mass. D.P.H. and the 
state Medkakl program through joint planning 
arxl program administration.* 


no answer to the questkm 


Michigan 


*lt varies across provkiers.* 


*DSS has designated an AIDS Coordinator 
to help with the coordinatk>n and integratkm 
of DSS and MDPH care servk»s. The DSS 
coordinator as well as MDPH sits on the Title 1 
Planning Council and Title II consortia.* 


no answer to the question 


Minnesota 


Minr)esota does not provkie consortia with its Title II program. 
1 1 


Mississippi 




Mississippi does not provide consortia with its Titi 


e II program. 


Missouri 


yes 


*Medk:akl AIDS waiver sennces is the 
best example.* 


*Medk:aid applk:atk>n process.* 


Montana 


no answer to the questk>n 


*Client may be accepted [by Title II] on provi- 
sk>nal basis but must apply for and be declared 
ineligible for Medicaid within 90 days.* 


no answer to the questk>n 


Nebraska 


yes 


Ryan White is payer of last resort 


no answer to the questkm 


Nevada 


yes 


*We share an online electronic verification of 
eligibility system; the state Medk:aid AIDS 
Coordinator is an ad hoc member of the state- 
wkle Title II consortium and the state AIDS 
Task Force.* 


*Barriers center around the lack of a 
[Medkakl] waiver for PWA and poor 
[Medkxikl] hospne coverage.* 



30 



Table 2-5 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia and Medicaid 





Do HIV Consortia Cover the Use 

of Services When Need 
Exceeds Any Medicaid Limits? 


Effective Methods and Policies 
for the Coordination of Medicaid and 
Title II of the Ryan White CARE Act 


Barriers to the Coordination and 
Integration of Medicaid and 
Title II of the Ryan White CARE Act 


New Hampshire 


Ne 


iw Hampshire does not provide consortia with its ' 


Pitle II program. 


New Jersey* 


'Case by case basis; if Medicaid 

places a limit on a needed 
service, it is possible ttiat Title 
II consortia will cover those 
services.* 


*The most effective methods ... for coordination 
occur outskle [Title II ] ... consortia compor>ent. 
The [Title II] HIV Home Care program fills the 
gaps for clients before qualifying for Medicaid 
and for [services] above Medicaid limits 
[Title II] AIDS Drug Assistance Program also 
fills gaps prior to Medicaid initiation arxl is 
administered by our Medicakl Unit within 
the Department of Human Servwes.* 


'One barmr is ttiat Medicaki is not handled by 
the NJDHSS, but is a program of the NJDOHS. 
Also, at the provider level, line staff providing 

servk»s are usually not the indivkluals in 
their irtstitutrons charged with fiscal oversight 
of either their project, nor of the overall HIV/ 

AIDS work of the institutk>n. Therefore, 
coordinating the collectk>n of comprehensive 
data on all HIV expenditures at an institutk>n 
for a Ryan White service has been 
extremely difficult.* 


New Mexico 


New Mexico does not provide consortia with its Tit 


\e II program. 


NewYorit* 


no 






**The State Medicaid Program is within the State Department of Social Services (SDSS). The AIDS Institute (Al) is within the State Department 
of Health, and it has established and ongoing woridng relationship with the SDSS. The Al has developed HIV-specific Medicaid rates for 
the provision of quality HIV services (inpatient and outpatient services, primary care in clinics arKi private physician offices, AIDS day 

health care, home care, hospice, nursing facility and case management services. The Al has established standards of care to 
ensure quality HIV services ... Additionally, the Al works closely with SDSS on utilization review issues to identify fraud and atiuse 
and on billing data for evaluation purposes. All programs are required contractually to maximize available third party reimbursement 
streams, specifically Medicaid and the HIV enhanced rates. The HIV Uninsured Care programs coordinate eligibility of participants, 
assist individuals to meet Medicaid spend down requirements, and encourage transition to Medicaid for eligible individuals." 


**The NYC Division of AIDS Services (DAS) limits home care reimbursement to three contractual agencies. 
Individuals served by [other] home care agencies funded by Title II must change providers and disrupt care to transition 
to Medicaid [from Title II]. An electronic eligibility verification match was recently implemented for improved 
efficiency in coordination with Medicaid.* 


North Carolina 


yes 


no answer to the question 


no answer to the questk>n 


North Dakota 


yes 


no answer to the question 


no answer to the question 


Ohio 


no 


*As soon as PWA are Medicaid eligible, 
(esp. clients in ADAP), we suggest they sign up 
for Medicaid. When they meet [Medicaki] 
spenddown or become Medicaid eligible, 
we have Human Sen^k:es reimburse our 
ADAP. We fiave access to Human 
Service's data base.* 


*Medicaki spenddown — temporary nature 
of Medicaki eligibU'ity.* 


Oklahoma 


no 


no answer to the question 


limited Medrcaid-covered services; the 
reorganization of the Medicaki agency in 
Oklahoma; and budget cuts 


Oregon 


yes 


*Enrollment in Oregon Health Plan [Medicaid] 
first for more comprehensive coverage, using 
fTitle II] to fill gaps. Offering initial anonymous 
HIV-related health care at k)cal health depart- 
ments, reducing need to go to a private doctor.* 


*Ellglbility requirements for OHP [Medkxikl] 
more stringerrt than [Title II]; complexity of 
OHP - lack of understanding, availability, and 
t>enefits; possible premiums arfd co-pays in 
future OHP reviswns; some services not 
covered by OHP; and 3 months proof required 
to establish income level [for OHP eligibility].' 



31 



Table 2-5 

HIV Consortia Funded by Title II of the Ryan White CARE Act during 1995: 
HIV Consortia and Medicaid 





Do HIV Consortia Cover the Use 

of Services When Need 
Exceeds Any Medicaid Limits? 


Effective Methods and Polk:ies 
for the Coordinatk>n of Medicaid and 
Title II of the Ryan White CARE Act 


Barriers to the Coordination and 
Integration of Medicaid and 
Title II of the Ryan White CARE Act 


Pennsylvania 


not sure if there are state 
Medicaid utilization limits, they 
may do so 


'Medicakl staff attend and participate in State 
HIV Plannirig Council and inform the Council 

(made up of consortia representatives) of 
Medicakl policies and activities that may be 
relevant to consortia." 


The Medkaid program is k>cated in a 
different department (Department of Public 
Welfare)." 


Rhode Island 


no response to the survey 






South Carolina 


no Medicaid utilization limits 
fthat 1 knowoT) 


*A Title ll-fur)ded outpatient clinic at the Medical 
University of S.C. provides a 'seamless' 
transition from Title II to Medicaid when a 
patient becomes eligible [for Medicaid]." 


"None - we work vrall together." 


South Dakota 


S 


>outh Dakota does not provkie consortia with its T 


tie II program. 


Tennessee 


yes 


Medicaid became "TennCare in Jan., 1994. 
We can use [Title II] for anything not otherwise 
covered. The vast majority of people with HIV 
are eligible for [TennCare] coverage. Prior to 
this we had 100% of [Title II] money in drug 
assistance ... ' 


"During early 1995 a new admjnistratk>n 
took over and the entire [Title II] program 
is being restructured under new directors. 
Thus barriers/positives are as yeA unknown." 


Texas 


yes 


"Agencies v^k:h contract for funds with the TDH 
are required to become a Meduaid provkJer 
for applk:at>ie program activities as required 
by the TDH GENERAL PROVISIONS FOR 
CONTRACTS, STANDARDS FOR 
FINANCIAL MANAGEMENT. Artkde 9." 


"The costs associated with Medkakl provkler 
eligibility may be detrimental to the viability 
of the organizatkm presenting significant 
barriers to compliarKe with Artk^le 9. or 
enforcement of Article 9 may have resulted 
in a k>ss of critKal HIV/AIDS servk^ to the 
community; therefore, the TDH estat>)ished 
HIV/STD Polk:y 590.1 to grant waivers to 
the Article 9 provision upon request and 
verification, as well as automatic, unconditional 
waivers to agencies lk»nsed as 'Special 
Care Facilities' or 'Special Care Hospitals'." 


Utah 


no Medrcaid utilization limits 
(cost effectiveness restrictions) 


There is "not a great deal of coordinatk>n/inte- 
gration' with consortium services and Medicakl. 


"Medicaid has no 'mandate' to coordinate; 
therefore other priorities within the program 
take precedence." 


Vemiont 


no Medicaid utilization limits 


no answer to the question 


no answer to the question 


Virginia 


yes 


"Staff firom Medicakl sit on Department of 
Health advisory committees." 


Service coordination, however, is adversely 
affected [because] Medkxikj is rMt allowed 
to share any client data with 
the Department of Health." 


Washington 


rK> Medk:akJ utilization limits 


"Medicaid program staff serve on 
local consortia." 


no answer to the question 


West Virginia 


no MedKakj utilization limits 


'Client must use Medicaid first. If not eligible 
or in spenddown, Title II kicks in." 


rtone 


Wisconsin 


yes . 


MedkakI rates are used to pay for 
consortia servk:es 


"Separate administration: regional differerKes 
of Medicakl programs; lag time between 
[Medkaid] applk:ation and approval." 


Wyoming 


No true consortia in Wyoming. Our best effort has produced only a network. The lead agency is the Health Department. 
We pay the bills as they are forwarded by case managers. 


"States with the highest incidence of AIDS. 


Source: Robert J. Buchanan. Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Rnancing Administration. U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



32 



coordination. The response from Florida highlights the role of case management in 
Title ll/Medicaid coordination: "Case management agencies throughout Florida are 
key entry points for Title II services. Case managers assist clients in navigating and 
obtaining the appropriate services like Medicaid. They also ensure that Title II is the 
payer of last resort." 

Barriers to Title ll/Medicaid Coordination 

The questionnaire asked the AIDS program directors to "describe any barriers 
to the coordination and integration of the Medicaid program with the Title II program in 
your state." As Table 2-5 presents, a number of AIDS program directors responded 
that administration of the two programs by different state agencies is a barrier to 
coordination and integration of Title II and Medicaid, although Florida noted that 
"coordinated meetings and cross-training opportunities have been helpful" in 
overcoming barriers caused by separate program administration. AIDS program 
directors in other states noted that the Medicaid eligibility/application process is 
difficult and time consuming. Confidentiality requirements were reported by AIDS 
program directors as barriers to Medicaid/Title II coordination in a number of states. 
For example, the response from Virginia noted that "service coordination... is adversely 
affected [because] Medicaid is not allowed to share any client data with the 
Department of Health." 

Summary and Discussion 

Public programs, particularly the state Medicaid programs, pay for the health 
services provided to most people with AIDS and a significant percentage of people 
infected with HIV.^ However, the Medicaid programs establish restrictive eligibility 
criteria, requiring during 1993 that incomes be below $434 per month in most 

33 



states.^^ Programs funded by the Ryan White CARE Act provide services to people 
with AIDS and HIV infection with higher income levels, broadening and strengthening 
the public-sector safety net for financing HIV-related health care. This paper focused 
on HIV consortia funded by Title II of the CARE Act, presenting data on consortia 
characteristics, the services provided by these consortia, eligibility criteria for these 
services, and coordination of the HIV consortia programs with the state Medicaid 
programs. 

The study identified a range of medical and support services that the HIV 
consortia funded by Title II provided during 1995 in the various states. Among the 
most effective consortia services identified by the study are: case management, 
primary medical care, drugs/medication, dental care, and home care. However, as 
the response from Florida summarized: "a single service cannot be identified as [most 
effective]. It is the continuum of care that makes Title II effective - the broad array of 
services covered [in Florida]." The services identified in Table 2-3 offer examples to 
the HIV consortia funded by Title II of the broad array of medical and support 
services that comprise the continuum of care needed by people with HIV illness. 

The study also identified the medical and financial criteria necessary for 
individuals to become eligible for HIV consortia services. The study documents that 
the state Title II programs have established generous income eligibility standards for 
services provided by HIV consortia, especially when compared to Medicaid eligibility 
standards. Hence, HIV consortia funded by Title II can provide services to people 
infected with HIV who have incomes too high to become eligible for Medicaid 
coverage. The Title II programs strengthen the public-sector safety net for funding the 
care needed by people with HIV-related illness. 

34 



To coordinate HIV consortia programs witli the state Medicaid programs, 
Medicaid representatives serve on Title II boards and committees in a number of 
states. In addition, case managers can assist individuals who have HIV disease with 
the Medicaid eligibility process. This role for case managers is important because a 
number of state AIDS program directors identified the Medicaid eligibility /application 
process as a barrier to the coordination of Medicaid with the Title II programs. 
Another barrier to Medicaid/Title II integration and coordination mentioned by AIDS 
program directors in a number of states is the administrative separation of the two 
programs in different state agencies. Coordinated meetings and cross-training 
programs can help overcome the integration problems created by this separate 
administration of the Medicaid and Title II programs. 

Generous eligibility criteria and coverage of a broad array of medical and 
support services by HIV consortia allow these Title II programs to strengthen the 
public-sector safety net for financing the care needed by people with HIV-related 
illness. HIV consortia funded by Title II provide needed care to people with HIV 
disease before they become eligible for Medicaid or Medicare.*^ Generous eligibility 
criteria (or no income restrictions in some states), however, can become a double- 
edged sword. If federal funding for Title II programs is not sufficiently increased to 
keep up with the increasing number of people expected to receive benefits from Title II 

For a person with HIV illness to become eligible for Medicare requires meeting 
eligibility criteria for Social Security Disability Insurance (SSDI), including 
disability status, sufficient work-related history, and a 29-month waiting period (5 
months from disability status for SSDI payment to begin, then 24 additional 
months for Medicare coverage to begin). (See Baily, M., Bilheimer, L, 
Woolridge, J., Langwell, K., and Greenberg, W. "Economic Consequences for 
Medicaid of Human Immunodeficiency Virus Infection." Health Care Financing 
Review (1990 Annual Supplement): 97-108. 

35 



programs, or if future federal Medicaid reform allows the states to establish even more 
restrictive Medicaid eligibility standards, then the Title II programs may not be able to 
provide services for all eligible people. This could result in the use of waiting lists, 
reduced services, some other forms of rationing, or the implementation of more 
restrictive eligibility criteria, if federal funding for Title II programs in the future does 
not keep pace with the expected increase in the number of people eligible for Title II 
services, then the public-sector safety net for financing HIV-related care will be 
weakened. 

Acknowledgements: The author thanks the state AIDS program directors and the 
people on their staffs who took the time to answer the questionnaires that collected 
the data necessary for this research. Without their cooperation this study would not 
have been possible. 

This research was funded by the Health Care Financing Administration, U.S. 
Department of Health and Human Services (grant #18-P-90286/5-02). The views 
expressed in this paper are those of the author. No endorsement by the Health Care 
Financing Administration is intended or should be inferred. 



36 



References 



1. U.S. Department of Health and Human Services, Information about the Ryan 
White Comprehensive AIDS Resources Emergency Act of 1990 (Rockville, MD: 
Bureau of Health Resources Development, August, 1993). 

2. McKlnney, M.M., Wieland, M.K., Bowen, G.S., Goosby, E.P., and Marconi, K.M. "States' 
Responses to Title II of the Ryan White CARE Act," Public Health Reports Vol.1 08,No.1 (19930: 4- 
11. 

3. Health Care Financing Administration, U.S. Department of Health and Human Services, Improving 
Coordination Between Medicaid and Title II of the Ryan White CARE Act (Baltimore, MD: Office of 
Legislative and Intergovemmental Affairs, April 28, 1995). 

4. See note 3. 

5. See note 3. 

6. Aday, LA., Pounds, M.B., Marconi, K., and Bowen, G.S. "A Framework for Evaluating the Ryan 
White CARE ACT: Toward a Circle of Caring for Persons with HIV/AIDS." AIDS and Public Policy 
Journal Vol.9,No.3(1994): 138-145. Also see note no.3 and note no.2. 

7. See note 2. 

8. National Alliance of State and Territorial AIDS Directors, National Alliance of State and Territorial 
AIDS Directors - 1995 Directory (Washington, DC: 1995). 

9. U.S. Department of Health and Human Services, Health Resources and Services Administration, 
Bureau of Health Resources Development, Division of HIV Services, Rvan White CARE Act Title II 
State Contacts - FY 1995 Title II Contacts (Rockville, MD: Septemt>er 28, 1995). 

10. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report. 1995; 7(no.2): 1-39. 
Figure 1: Male adult/adolescent AIDS annual rates per 100,000 population, for cases reported in 
1995, United States. 

11. See note 2. 

12. See note 2. 

13. See note 3. 

14. See note 3. 

15. Buchanan, R. "Medicaid Eligibility Policies for People with AIDS." Social Work in Health Care 
Vol.23,No.2(1996): 15-41. 

16. See note 15. 

17. See note 3. 



37 



18. 



Buchanan, R. "Medicaid Policies for Home Care and Hospice Care Provided to 
Medicaid Recipients with AIDS," AIDS and Public Policy Journal Vol. 10, No. 4 
(1996): 221-237. 



19. See note 3. 

20. Schur, C. and Berk, M. Health Insurance Coverage of Persons with HIV-Related Illness: Data 
From the ACSUS Screener. AIDS Cost and Services Utilization Survey (ACSUS) Report. No.2. 
AHCPR Pub. No. 94-0(M)9. (Rockville, MD: Agency for Health Care Policy and Research, 1994). 

21. See note 15. 



38 



Chapter 3 

Drug Assistance Programs Funded by Title II of the Ryan White CARE Act^ 

Introduction 

The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act (Public 
Law 101-381) was enacted in August, 1990 to improve both the quality and availability 
of care for people with HIV disease and their families.^ The original legislation 
authorized: grants to metropolitan areas with the largest number of AIDS cases to 
help provide emergency services (Title I); grants to the states to improve the quality, 
availability, and organization of health and related support services (Title II); grants to 
state health departments for AIDS early intervention services (Title lll-a) and 
community-based primary care facilities (Title lll-b); and grants for research and 
evaluation initiatives, including demonstration programs for pediatric AIDS research 
(Title IV).^ Title II of the CARE Act allows states to allocate funds among any or all of 
four areas to cover home-based health services, to provide medication and other 
treatments, to continue private health insurance coverage, or to fund HIV care 
consortia.^ 

Although the Ryan White legislation did not established income eligibility 
restrictions for people to receive CARE act services, the law did specify that CARE Act 
programs must be the payer of last resort."* However, Ryan White funds can be used 
to pay for care provided to Medicaid recipients if the state IVIedicaid program does not 
cover a needed health service or if a {Medicaid recipient's need for a health service 
exceeds the Medicaid program's limits on utilization. If a state Medicaid program does 

^his research is published in AIDS & PUBLIC POLICY JOURNAL, Vol. 11, No. 
4, 1996. 

39 



not cover hospice care, for example, a Medicaid recipient can receive that service 
through a program funded by the CARE Act, if available. Similarly, if a Medicaid 
recipient needs more home nursing visits then allowed by the state Medicaid program, 
programs funded by the CARE Act may pay for additional home nursing care.^ The 
objective of this paper is to identify how the states provided medications and other 
treatments during 1995 with drug assistance programs (DAPs) funded by Title II of the 
Ryan White CARE Act. The paper discusses characteristics of the DAPs established 
by the states, medical and financial eligibility criteria for DAPs, the use of any waiting 
lists for DAP benefits, and the coordination of Medicaid/DAP eligibility. 

Methodology 

To identify how the states are using Title II funds to implement DAPs, state AIDS 
program directors were surveyed. The names and addresses of these directors in 
each state were obtained from the National Alliance of State and Territorial AIDS 
Directors.^ In addition, the address file was updated with the names and addresses 
of AIDS program directors obtained from the Health Resources and Services 
Administration of the federal government.'^ 
Survey Process 

A DAP questionnaire was mailed to these AIDS program directors in May, 1995. 
Three additional mailings of the questionnaires were sent to the states not participating 
in the survey. When the survey was completed in early 1996, AIDS program directors 
(or their staffs) in 49 states and the District of Columbia provided DAP data (no reply 
was received from Rhode Island). The survey responses were summarized into tables 
and mailed to the AIDS program directors for verification and updates in April, 1996. 

40 

I 



Any additional information received during the verification process were added to the 
final tables used in this paper. 
Incidence of AIDS 

The incidence of AIDS and HIV infection varies widely among the states. Since 
the focus of this paper is the implementation of DAPs funded by Title II during 1995, 
state-level AIDS rates per 100,000 population for 1995 were used to put state-level 
policies for DAPs into the context of the incidence of AIDS. The map for male 
adults/adolescent AIDS annual rates was used for this study to present the incidence 
of AIDS throughout the United States, with each state assigned to one of our four 
AIDS-incidence categories.® To illustrate the incidence of AIDS throughout the United 
States, the states were classified according to reported cases: highest incidence of 
AIDS (75 or more AIDS cases per 100,000 population); high incidence (50 to 74.9 
AIDS cases per 100,000 population); medium incidence (25 to 49.9 AIDS cases per 
100,000 population) or low incidence (0 to 24.9 AIDS cases per 100,000 population). 
Table 3-1 summarizes the categorization of the states by the incidence of AIDS. 

Background 

Drug therapies for the treatment of HIV infection and related opportunistic 
infections have emerged as the major method for improving the quality of life and 
increasing the length of survival for people with AIDS. Due to the large number of 
HIV-related opportunistic infections, the number of drug therapies people with AIDS 
and HIV infection require can be extensive. Nucleoside antiretroviral agents (e.g., 
zidovudine) delay the progression of HIV infection to AIDS.^ Therapy with HIV 
protease inhibitors (e.g., saquinavir) has been shown to decrease viral loads and 
elevate CD4 cell counts with relatively few adverse effects. ^° Furthermore, the 

41 



Table 3-1: 

Categorization of the States by AIDS Incidence Rates for Males (1995) 



LOW INCIDENCE (Less than 25.0 cases per 100,000 population): Alaska, Arkansas, 
Idaho, Iowa, Indiana, Kentucky, Maine, Minnesota, Montana, Nebraska, New 
Hampshire, New Mexico, North Dakota, Ohio, Oklahoma, South Dakota, Utah, 
Vermont, West Virginia, Wisconsin, and Wyoming. 



MEDIUM INCIDENCE (25 - 49.9 cases per 100,000 population): Alabama, Arizona, 
Colorado, Illinois, Kansas, Massachusetts, Michigan, Mississippi, Missouri, North 
Carolina, Oregon, Pennsylvania, Rhode Island, Tennessee, Virginia, and Washington. 



HIGH INCIDENCE (50 - 74.9 cases per 100,000 population): Georgia, Hawaii, 
Louisiana, Nevada, South Carolina, and Texas. 



HIGHEST INCIDENCE (75 and over cases per 100,000 population): California, 
Connecticut, Delaware, District of Columbia, Florida, Maryland, New Jersey, and New 
York. 



42 



combination of nucleoside antiretrovirals with protease inliibitors may liold the greatest 
potential for reducing plasma HIV and increasing CD4 cell counts as compared to 
drug monotherapy.^^ Various drug therapies are used to treat or prevent 
Pneumocystis carinii pneumonia (PCP)/^ toxoplasmosis,^^ mycobacterium avium 
complex/^ and CMV retinitis.^® The incidence rates of a number of opportunistic 
infections among people with HIV disease have declined over the past five years and 
are being diagnosed at a later stage of HIV disease due to the effective use of antiviral 
drugs, targeted preventive therapy, and more comprehensive clinical management of 
the disease. 

DAP Characteristics 

Health insurance coverage affects the access that people with HIV infection 
have to drug therapies. For example, a study of men with HIV infection, but without 
clinical AIDS, who lacked health insurance were less likely to receive antiretroviral 
therapy than similar men with health insurance.^® The same study concluded that 
people with AIDS covered by health insurance were more likely to receive antiretroviral 
therapy than the uninsured people with AIDS. Given the importance of drug therapies 
to the health status of people with HIV infection, and the association of health 
insurance with the use of these therapies, the DAPs funded by Title II of the CARE Act 
are important components of the public sector safety net for HIV-related care. These 
DAPs not only can provide drug therapies to people with HIV who lack health 
coverage, but can benefit people with health insurance whose coverage does not 
include prescription drugs or Medicaid recipients who have exceeded the drug 
utilization limits many states impose.^® 



43 



DAP Formulary 

A formulary is a list of selected pharmaceuticals and their appropriate dosages 
that an insurer or program will cover or provide to people eligible for their services.^ 
In the context of this paper, a formulary refers to a listing of medications that the Title 
ll-funded DAP in each state provide to eligible people. The questionnaire asked the 
AIDS program directors if the DAP in their state utilized a drug formulary, and if yes, 
the number of drugs on the formulary during 1995. As Table 3-2 illustrates, almost all 
DAPs funded by Title II had drug formularies during 1995, with the number of drugs 
covered as high as 191 in New York. 

The questionnaire asked how new drugs were added to the formulary during 
1995. As Table 3-2 presents, the decision to add new drugs to the DAP formulary In 
most states is made by a board, panel, or committee. A number of states noted that 
the cost of medications or the availability of funds is part of the decision-making 
process when deciding to add new drugs to the formulary. The questionnaire asked 
the AIDS program directors to compare the number of drugs on the formulary in 1995 
to the 1993 formulary. As Table 3-2 illustrates, the number of medications on DAP 
formularies during 1995 has increased since 1993 in most states. The questionnaire 
also asked the AIDS program directors if they expected the number of drugs on the 
DAP formulary in their state during 1996 to change when compared to 1995. As Table 
3-2 documents, the number of drugs on DAP formularies during 1996 was expected to 
decrease in a number of states when compared to the number of drugs covered in 
1995. 



44 



Table 3-2 

Drug Assistance Programs Furtded by Title II of ttw Ryan White CARE Act during 1995: 
Prescription Drug Formularies 







Compared to 1 993, 
the Numtwr of 

Drugs on the 1995 
Formulary has: 


During 1996 the 
Numt>er of Drugs 
on the Formulary 
is Expected to: 


During 1995 Does 
theDAPAIk>wthe 
Off-Lat>el Use of Drugs 
on the Formulary? 




Does DAP Have 
a 1995 Drug 
Formulary? 


During 1995 the 
Numt>er of Drugs on 
the Formulary was: 


How are New 
Drugs Added to 
the Formulary? 


Alabama 


yes 


7 


Due to budget constraints, 
no new drugs are added 


increased since 1993 


increase in 1 996 


no 


Alaska 


no 


rx>t applkatile 


all up to the physician 


no formulary 


no formulary 


yes - up to ttie 
physician 


Arizona 


yes 


12 


Recommendation by Ryan 
White advisory committee 


increased since 1993 


change - add and 
delete some drugs 


yes 


Arkansas 


yes 


SCOther drugs 
may t>e provided for 
a limited time.*) 


Each consortium may add 
to formulary according to 
their ability to pay. 


increased since 1993 


increase in 1996 


no 


Callfomia(l) 


yes 


43 


edical Advisory recommend 
additions, if funds sufficient 


increased since 1993 


increase in 1996 


ntrt officialty 


Colorado 


yes 


14 


added by a t>oard/review 
committee decision 


increased sir>ce 1993 


decrease in 1996/ 
remain the same 


yes 


Connecticut(1) 


yes 


58 


Meeting of Ct AIDS Drug 
Advisory Committee 


ir>creased since 1993 


increase in 1996 


no 


Delaware(1) 


yes 


30 


apply to the 
formulary committee 


increased sirtce 1 993 


increase in 1996 


no 


District of 
Columbia(1) 


yes 
TheHADAP 
and qi 


33 

drug review ar«d rect 
jorum of the HADAP 


Mnmerxtetton sub-committee r 
committee of ttie wtwle: the re 
and publicized in 


irtcreased since 1 993 
eviews and accepts the c 
icommerKlation is proces 
the Distiict register. 


increase in 1996 
rug for listing, which 
sed through govemm 


yes 

then requires a vote 
lent channels 


Florida(l) 


yes 1 9 1 ** 1 increased since 1993 | increase in 1996 | no 
**1 . Antivirals receive priority; 2. drugs for prophylaxis and treatinent of opportunistic infections basad on rate of incklertce and fiekl 
recommendations; 3. statewide clinical formulary committee must approve recommendations. 


Georgia 


yes 


5 


recommendation of 
statewide medical 
providers task force 


increased since 1993 


remain the same 


no 


Hawaii 


yes 


25 

•"Request from p 


^lysicians and the community. 


increased since 1993 
advice from medical adv 


increase in 1996 
isor, availability of fur 


no 

ids. 


Idaho 


yes 1 8 1 ~ 1 increased since 1993 | increase in 1996 \ yes 
~Providers arKi clients are surveyed about feasibility and need. Cost estimates are determined and STD/AIDS staff decide. 


Illinois 


yes 


110 1 ■— 1 increased since 1993 

The Title II Advisory Committee makes recommerxiatkMis to the IDepartmerr 
that it is feasible to add a new drug, administrative rules must t> 


decrease in 1996 1 yes - "We do not ask or 
1 monitor off-lat}el use.' 
. If the Department determines 
e promulgated,* 


IIIUICll Ki 


yes 


20 


recommendations made 
by advisory committee 


increased since 1993 


decrease in 1996 


no - *We do not 
monitor this.* 


Iowa 


no 


not applicat>le 


varies with each consortia 


remain the same 


increase in 1996 


rK> 


Kansas 


yes 


22 

— "A committee of th 


e statewide consortium fonwar 


increased since 1 993 
ds a recommendation to 


increase in 1996 
the consortium for ap 


yes 

proval.* 


Kentucky 


yes 


16 


recommendations made 
by advisory panel 


increased sir)ce 1993 


remain tt>e same 
(may decrease) 


no answer 


Louisiana 


yes 

(r 


>50 

K> DAP - "Drugs are < 


x>vered through charity hospit 


als and emergency assis 


tance via [Title II] con 


sortia.") 


Maine 


yes 1 6 1 * 1 decreased since 1993 1 increase in 1996 
'^A recommendation is made by an advisory subcommittee to the program's management and subsequent de 


no 

pattment approval. 


Marytand(l) 


yes 


25 


MADAP Advisory Board 
determines additions 


increased since 1993 


increase in 1996 


yes 


Massachusetts 


yes 


not available 


medical advisory board 
meets twice a year 


increased since 1993 


increase in 1996 


no 


Michigan 


yes 


15 


recommendations from 
physician advisory group 


increased since 1 993 


deperKds on FDA 
approval of drugs 
and funding 


no 


Minnesota 


yes 


34 

**Reviewed by AIDS 


AA 

Physician Advisory Committe 


no formulary at first 
e and approved by HIV/A 


increase in 1996 
JDS Programs Coorc 


yes 

inator. 


Mississippi 


yes 


11 


vote by Early Interv. and 
Care Committee for STD/HIV 


increased since 1993 


increase in 1996 


no 


Missouri 


open formulary** 


not applicable 
***ln addition. 
Effective 


FDA approved 
each TiUe II consortia in Misso 
10/1/96 the Titte II DAP in Mis 


increased since 1993 
uri can elect to establish 
souri will establish a state 


remain the same 
their own formulary, 
jwide formulary. 


yes 



45 



TaUe3-2 

Drug Assistance Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Prescription Drug Formularies 







Compared to 1993, 
the Number of 

Drugs on the 1995 
Formulary has: 


During 1996tfie 
Number of Ougs 
on the Formulary 
is Expected to: 


During 1995 Does 
theDAPAIkjwthe 
OfF-Label Use of Drugs 
on the Formulary? 




Does DAP Have 
a 1995 Drug 
Formulary? 


During 1995 the 
Number of Drugs on 
the Formulary was: 


How are New 
Drugs Added to 
the Formulary? 


Montana 


yes 


5 


plan to establish a 
review panel 


increased since 1993 


remain the same 


no 


Nebraska 


yes 


23 (includes listing 
'antidepressant^ 


reviewed quarterty by Drug 
Util. Review Committee 


remain the same 


increase in 1996 


no 


Nevada 


yes 


rwt available 


demand as noted by clink:/ 
physician/client requests 


increased since 1993 


increase in 1996 


yes 


New Hampshire 


yes 


not available 


medk»l advisory board 
approves additions/deletions 
arKl restrictions 


increased since 1 993 


remain the same 


yes 


NewJersey(l) 


yes 
«AnFD/ 


44 

Approved drug is re 
a d 


# 

commended by tf)e DepL of H 
nical review committee's recoi 


increased since 1993 
ealth's AIDS Diviskm. A| 
mmendations arul availal 


irtcrease in 1996 
iproval is 'based on : 
>le funds.' 


yes 

survey results, 


New Mexico 


yes 


33 (35 with 
multivitamins; in 
addition, contracep- 
tives are covered) 


HIV/AIDS medkal doctor 

and key 
Put)lic Health personnel 


irKreased since 1993 


increase in 1996 


no 


NewYori<(1) 


yes 

!#Recommended i: 


191 

>y a clinical subcomnr 


«# 

littee comprised of physicians 


increased since 1993 
with HIV specialization, [ 


decrease in 1996 
>harmacists. nurses s 


yes 

ind people with HIV/AID 


North Carolina 


ADAP funded with state mortey - no Title II funds. 


North Dakota 


yes 


45 (other drugs 
consklered on an 
individual t>asis) 


requested drugs checked 
for application to HIV/AIDS 


increased since 1993 


increase in 1996 


no policy 


Ohio 


yes 


12 


drug advisory board 
meets semi-annually 


increased since 1993 


may increase 
in 1996 


no 


Oklahoma 


yes 


12 


medical advisory 
committee decides 


increased sirtce 1993 


remain the same 


no answer 


Oregon 


yes 


6 


undefined process involving 
community, clients, doctors 


increased since 1993 


increase in 1996 


if provKler prescribes 
it, "we'll supply it" 


Penrisytvania 


applicat>le - Pennsylvania uses no Title II funds to support the statewide ADAP program. 


Rhode Island 


no response 


3 to the survey 










South Carolina 


yes 


9 




increased sirtce 1993 


*We hope to add 
treatmerrts* 


no polny 


### Doctors, nurses, patients, and case managers are surveyed. Drugs added based on financial feasibility. 


South Dakota 


yes 1 33 1 @ 

@Ryan White administrator may add anyb 


increased since 1993 | increase in 1996 | yes 
me or at the yearly advisory council meeting. 


Tennessee 


yes 


14 


'Joint apF)roval by the 
AIDS Program Director, 
a department medical 
advisor, and the HDAP 
Director." 


increased since 1993 


increase in 1996 


yes 


Texas 


yes 

1 1 .requ 


22 

est from public or me 


1 

dical community; 2. recommei 


increased since 1993 
ndation of advisory comir 


increase in 1996 
littee; 3. approval by 


yes 

Board of Health 


Utah 


yes 


'antivirals* 


availat>ility of funds 
and consensus with 
HIV/AIDS providers 


decreased sirtce 1993 


remain the same 


no 


Vermont 


no 


rwt applicat>ie 


will fund any AIDS drug 
unless cost is prohibitive 


r>ot applicable 


devetopment of 
formulary in 1996 


yes 


Virginia 


yes 


11 


*Professk>nal consulta- 
tions and requests from 
practitioners.' 


increased since 1993 


irtcrease in 1996 


no 


Washington 


yes 


58 


steering committee reviews 
& recommends changes 


increased since 1 993 


increase in 1996 


no 


West Virginia 


yes 


6 


reviewed by AIDS Program 
Budget & Request 


increased since 1993 


increase in 1996 


no 


Wisconsin 


yes 


10 


'As directed by statute, 
outside experts must first 
be consulted.' 


increased since 1993 


increase in 1996 


no 


Wyoming 


no 


not applM:at>le 


Drug must be approved 
by the FDA 


remain the same 


remain the sante 


yes 


(1) States with the highest Incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the R^n White CARE Act This research was funded by a grant from the 
Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 1 8-P-90286/5-01 ). 



46 



Off-Label Use 

Prior to marketing, a drug must be approved by the Food and Drug 
Administration (FDA) as safe and effective for uses described in a New Drug 
Application.^^ Evidence of safety and efficacy are provided by the manufacturer from 
investigations of the drug's effects on controlled patient populations. These 
investigations substantiate the use of a drug for specific indications. Although a drug 
may have multiple uses, the FDA only approves labeling which reflects indications for 
conditions that have been researched within these trials. If later indications are 
studied, the drug manufacturer must file a supplemental application to the FDA in 
order to add a new indication to the labeling.^ 

A physician, however, can prescribe a drug approved by the FDA for other 
indications besides those listed in the product label. In many circumstances the 
standard of care for a particular condition may include a drug not labeled for that 
use.^ Prescribing a drug in this manner is commonly called "off-label" or "unlabeled 
use" and this practice is supported by such organizations as the FDA, the American 
Medical Association, and the American Society of Hospital Pharmacists.^* ^ In a 
study of oncologists, one-third of drug administrations were given for off-label uses.^ 
The absence of an indication within the product labeling, however, does not suggest 
that off-label use is experimental or inappropriate. In many cases there is considerable 
evidence in the medical literature to support an unlabeled indication. Instead, an 
omitted indication is typically one that has not been extensively studied by the drug 
manufacturer. Nevertheless, other researchers may have examined additional uses of 
the drug and reported their findings to the scientific community. 



47 



Many drugs used in the management of HIV or in the treatment of associated 
opportunistic infections are prescribed "off-label."^ Drugs like trimethoprim- 
sulfamethoxazole and clindamycin were developed years before the identification of 
HIV. Consequently, there is usually little incentive for drug manufacturers to expend 
resources to investigate new indications for drugs already marketed. Other uses for 
drugs like acyclovir and ciprofloxacin are well described in the medical literature; 
therefore a pharmaceutical company is likely to achieve better returns on investments 
made in other research than to investigate new indications for existing drugs. Even 
drugs like ganciclovir which was developed and is labeled for treatment of 
cytomegalovirus (CMV) retinitis in immunocompromised patients, also has unlabeled 
uses for other AIDS-related conditions.^ 

Recent FDA actions increase the Importance of allowing off-label uses of drugs 
in AIDS-related care. In response to the spread of HIV infection, the FDA has modified 
its policies to accelerate approval of drugs for serious and life threatening conditions, 
such as AIDS, and to allow access earlier in the approval process than previously 
permitted.^ ^ While these modifications have expanded the number of therapeutic 
agents available to treat HIV-related conditions, the labeling of many of these drugs 
has been approved with narrow indications which can constrain access for patients to 
these drugs if DAPs funded by Title II of the Ryan White CARE Act do not allow off- 
label use. Another reason for off-label use is that clinical expertise in the rapidly 
evolving field of AIDS-related care outdistances the regulatory process for approving 
new uses of drug therapies. As a result, policies preventing the unlabeled use of 
medications are particularly inequitable for drugs to treat AIDS-related conditions. 



48 



The questionnaire asked the AIDS program directors if the DAP in their state 
allowed the off-label use of drugs on the formulary during 1995. As Table 3-2 
illustrates, Title ll-funded DAPs in a number of states allow off-label use, with some 
states noting that they do not monitor for this use. A policy permitting off-label use of 
medications allows the patients' physicians to prescribe the most appropriate drugs for 
treatment. 

DAP Beneficiaries and Eligibility Policies 

The CARE Act did not establish income restrictions for individuals to receive 
benefits from Title li programs, although the statute did specify that CARE Act 
programs must be the payer of last resort.^^ Given the absence of federally-set 
income standards for eligibility, the states have the ability to establish their own 
financial eligibly criteria for individuals to receive Title II benefits. The survey asked the 
AIDS program directors to provide: the number of people receiving DAP benefits; 
medical and financial eligibility criteria for DAPs; spend down procedures for eligibility; 
and any use of waiting lists. 
People Receiving HIV DAP Benefits 

The questionnaire asked the AIDS program directors to estimate at the time of 
the survey (mid 1995) the number of people receiving benefits from the DAP funded 
by Title II in their state, with these estimates presented in Table 3-3. The questionnaire 
also asked the AIDS program directors to estimate how the number of people 
receiving DAP benefits in 1995 compared to the number of people receiving these 
benefits in 1994. As Table 3-3 illustrates, most states reported that the number of DAP 
beneficiaries increased during 1995. In addition, the questionnaire asked the AIDS 
program directors to estimate how the number of people receiving DAP benefits in 

49 



Table 3-3 

Drug Assistance Programs Funded by Title II of the Rysin White CARE Act during 1995: 
Beneficiaries and Qigibility Criteria 





Estimates of the Number of People 
Receiving Prescription Drug Benefits from 
the Drug Assistance Program (DAP): 


Medical 
Qigibility 
Requirements 

fnr DAP 


To be Financially Eligible for 
DAP Gross Monthly Income 
during 1995 Cannot Exceed: 


1995 


1^7^70 oonripareQ 
to 1994 


oonipcueci 
to 1995 


1 -Person 
Household 


4-Person 
Household 


Alabama 


612 


increase in 1995 


increase in 1996 


HIV+,CD4<500 


$1,867.50/month 


$3,787.50/month 


Alaska 


6 to 8* 
"There's a Trtit 


increase in 1995 
) lllb-funded clinic in 


increase in 1996 

("Changes to 
Medicaid would 
have big effect.') 
the area with most p 


HIV+, physician 
Rx for HIV-related 
condition, no 
other coverage 
atients and it covers es 


"not set - 'low 
income'" 

sentially all othervtris 


"not set - 'low 
income" 

e uncovered clients. 


Arizona 


450 


increase in 1995 


increase in 1996 


HIV+ 


$1,867/month 


$3,787month 


Arkansas 


1000* 


increase in 1995 


increase in 1996 


Drug program 
part of Consortia 


$12,580/year 


$25,520/year 


California^ 


13,000 
(estimate) 


increase in 1995 


increase in 1996 


i_|r\/ 1 

riiv + 


$50,000/year 


N/A 


ooiorauo 


/UU + 


increase in 19^0 


iMureaSo in 199O 


mv ^ cuiQ pnyiMwian 
prescription 


•91 ,uoD/monui 


!t>ii,^uu/monin 


Connecticut^ 




increase in 1995 


increase in 1996 


HIV+, physician 
Ry for HIV-rBlated 
condition, no 


♦ 1 ,000/monln 


♦0, foa/vnonvn 


Delaware^ 


100 


increase in 1999 


reiTiain uie 
same 


HIV+ 


ipOl 0.00/ monui 


■9£.,aoi /monin 


District of 


OUU 


increase in 1995 


remain the 
same 


HIV/AIDS 

UICI^I lUCMd 


it>o, 1 1 o/monin 


!t>o,oi o/monui 


riuilua 


4,900 


increase in 1995 


increase in 1996 


l-ll\/4- 


$1,245/month 


$2,526/month 


Georgia 


1,015 


increase in 1995 


increase in 1996 


HIV+.CD4<500 


125% of federal 
poverty level 


125% of federal 
poverty level 


iKiWall 


135 


remain the 
same 


remain the 
same 


niVT, wL/tvouu 


$2, 151 /month 


$4,356/month 


lUculU 


40 


remain the 
same 


increase in 1996 


i-ii\/4- pn4^*?nn 


400% of 

pOVoTTy levol 


400% of 

nMtrA#4«« lAt#Al 

poverty level 




1,500 


increase in 1995 


increase in 1996 


UlCI^IIWdOU VVIUl 

HIV or AIDS 


$2,490/month 
^*t umes me 
federal poverty 
level) 


$5,050/month 


II luioi la 


505 
-There is 


increase in 1995 
low a waiting list, wl 


tich will continue unk 


>ss [Title 111 is reauthori 


$1,868/month 
zed and an increase 


$3,788/month 
d award received.' 


k)wa 


132 


increase in 1995 


increase in 1996 


HIV+ 


$1,246/month 


$2.524/month 


Kansas 


300 


increase in 1995 


increase in 1996 


HIV+ 


300% of 
poverty level 


300% of 
poverty level 


Kentucky 


326 


increase in 1995 


increase in 1996 


HIV+,CD4<550 


$22,41 0/year 


$45,450/year 


Louisiana 


(no DAP - 'Drugs are covered through charity hospitals and emergency assistance via fTrtie 11] consortia.') 


Maine 


75 


increase in 1995 


increase in 1996 


HIV+ 


$1,100/month 


$2,300/month 


Maryland^ 


308** 


increase in 1995 
(9-10%) 


increase in 1996 
(9-10%) 


HIV+/AIDS** 


$2,450/month 


$3,367/month 




1,200 


remain the 
same 


increase in 1996 


HIV+ 


$27,000/year 


$37,000/year 


Michigan 


250 


increase in 1995 


unknown-depends 
on level of funding 


not available 


$2,299/month 


$4,629/month 


Minnesota 


282-- 
— The ac 


increase in 1995 
tual number of peop 


increase in 1996 
le enrolled in the pro 


HIV+ 

sram was 345, but on\\ 


$1,867.50/month 
r 282 people actuallv 


$3,787.50/month 
' used the benefit. 


Mississippi 


835 


increase in 1995 


increase in 1996 


varies with drug 
covered by DAP 


$1,245/month 


$2,525/month 


Missouri 


905 


increase in 1995 


increase in 1996 


HIV+ 


$2,500/month 


$5,000/month 


Montana 


20 


remain the 
same 


remain the 
same 


no answer 


$623/month (for 
full coverage) 


$1,263/month (for 
full coverage) 



50 



Table 3-3 

Drug Assistance Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Beneficiaries and Bigibility Criteria 





Estimates of the Numtx 
Receiving Prescription Dru) 
the Drug Assistance Pro 


it of People 
3 Benefits from 

jlaill \iJr\r). 


Medical 
ciiyiuiiixy 

Requirements 

TOr UAV 


To be Financially Qigible for 
DAP Gross Monthly Income 
during 1995 Cannot Exceed: 


1995 


1995 Compared 
to 1994 


1996 Compzired 

10 1999 


1 -Person 
Household 


4-Person 
Household 


Nebraska 


178 


increase in 1995 


increase in 1996 


HIV+ 


$1 ,24o/montn 


♦io,480/year 


Nevada 


560 


increase in 1995 


increase in 1996 


HIV+,CD4<500, 
or niv-iinKou 
illness without 

CD4 requirements 


$1 ,o9D/montn 


$3,876/ montn 


New l-lampshire 


68 

(4/1-0/30/90 


remain the 
same 


increase in 1996 


no answer 


$22,410/year 
(300% of feder 


$45.450/year 
ai poverty level) 


New Jersey^ 


1,600 


increase in 1995 


increeise in 1996 


HIV+, physician 
certification 


$2,500/month 


$5,000/month 


rroW iVroXICO 


350 


increase in 1995 


llldoooo in l9^90 




$1,869/month 


$1,869/month 




17,139 


increase in 1995 
- ~ ~ 1 f , loy people ( 


in^roaco in 1 QQA 

lllWlOdSK? Ill I99W 

)nrolled, with 10,686 1 


ni V T 

seople receiving one o 


$3,666/montii 
r more prescriptions 


$6,200/month 
in 1995 






ADAP funded with : 


tuciLO 1 1 lui loy - 1 IV 1 luo 


II fi inHc 

11 lUIILIO* 






iNunn uaKoia 


12 


increase In 1995 


incioaso in I990 


UIW 1 

niv T 


no limit, however, "income level 
determines percentage paid but 
all are eligible for at least 80%.' 


Ohio 


600 


increase in 1995 


increase in 1996 


HIV+ 


$1,374/month 


$3,435/month 


Oklfihoma 


250 


increase in 1995 


Increase in 1996 


no answer 


$934/month 


$1,894/month 


Oregon 


267 


decrease in 1995 


increase in 1996 


HIV+, physician 
cert., CD4<500 


"Gross [income] up to 274% federal 
poverty level, sliding scale if higher." 


Pennsylvania 


Not applicable - Pennsylvania uses no Title II funds to support the statewide ADAP pr 


ogram. 


Rhode Isleind 


no respor 


ise to the survey 










South Carolina 


406 


increase in 1995 


increase in 1996 


HIV+,CD4<500 


$1,867.50/montii 


$3,787.50/month 


South Dakota 


35 


increase in 1995 


increase in 1996 


HIV+ 


$1,867.50/month 


$3,787.50/month 




250 


increase in 1995 


increase in 1996 


HIV+ 


$1,868/montii 
(net income) 


$3,788/montii 
(net income) 


Texas 


5,000 


increase in 1995 


increase in 1996 


drug specific 


$14,940/year 


$31,420/year 


1 Itah 


185 


increase in 1995 


remain the 
same 


HIV+ and ineligible 
for Medicaid 


$623/month 
(sliding fee scale) 


$1,263/montii 
(sliding fee scale) 


voimonx 


55 


increase in 1995 


increase in 1996 


HIV+ 


300% of poverty 
level, with adjust, 
for drug costs 


300% of poverty 
level, with adjust, 
for drug costs 


Virginia 


1,000 


increase in 1995 


increase in 1996 


HIV+ 


$1,245/month 


$2,525/month 


Washington 


428 


increase in 1995 


increase in 1996 


HIV+ 


$2,305/month 


$4,673/month 


West Virginia 


43 


remain the 
same 


increase in 1996 


HIV+ 


$1 ,569/month 


$3,174/month 


Wisconsin 


350 


increase in 1995 


increase in 1996 


HIV+ 


$1,290/month 


$2,600/month 


Wyoming 


67 


increase in 1995 


increase in 1996 


HIV+ 


$20,430/year 


$41,850/year 


'^States with the highest incidence of AIDS. 


*ln Alaska and Arkansas prescription daigs are provided through the Trtle II Consortia program not a separate Trtle II DAP. 


**ln Maryland 308 people are enrolled in the DAP, with 166 people receiving benefits. To be eligible for DAP in Maryland the applicant 
"must submit written certification by a physician that the applicant has been diagnosed as having HIV infection or AIDS; meets other 
specific criteria established by the FDA or guidelines issued by the Secretary of the [Maryland] Dept. of Health and Mental Hygiene for 
receipt of dmgs covered by MADAP and that the applicant will be treated wrth one or more drugs covered by MADAP." 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators, Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



51 



1995 compared to the number of people expected to receive these benefits during 
1996. Again, most AIDS program directors reported that the number of beneficiaries 
expected to receive DAP benefits will increase in 1996. (See Table 3-3.) 
Medical Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide medical 
eligibility requirements for people to receive benefits from the DAP funded by Title II 
during 1995. As the Table 3-3 demonstrates, most states responded that the 
individual must be HIV positive to meet medical eligibility requirements and a number 
of states also linked eligibility to a maximum CD4 count. Mississippi and Texas noted 
that medical eligibility requirements varied with the drug covered by the DAP in that 
state. In Mississippi, for example, to receive Pentamidine a patient must have a CD4 
count of 200 or less or have a documented episode of Pneumocystis carinii 
pneumonia; Gancyclovir is maintenance therapy for patients with defined 
cytomegalovirus retinitis. In Texas, for example, to receive Acyclovir a patient must be 
diagnosed with HIV infection and acute or chronic herpetic infections; to receive 
Itraconazole a patient must be diagnosed with HIV infection and diagnosed 
histoplasmosis or blastomycosis; and to receive Clarithromycin/Ethambutol a patient 
must be diagnosed with HIV and current or previous diagnosis of mycobacterium 
avium complex. 

Income Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide the maximum 
monthly income level an individual in a one-person household could have during 1995 
to be eligible for the DAP funded by Title II. In addition, the AIDS program directors 
were asked to provide the maximum monthly income a family of four could have 

52 



during 1995 for an individual witiiin tliat family to be eligible for the DAP. These 
financial eligibility requirements reported by the states are presented in Table 3-3. 

As Table 3-3 illustrates, the income ceilings established for DAP eligibility are 
relatively generous. This is particularly noticeable if these income eligibility standards 
for DAPs funded by Title II are compared to income eligibility standards for state 
Medicaid coverage (the largest payer of AIDS-related care.) For example, during 1993 
most individuals with AIDS could not have incomes in excess of $434 per month to 
receive Medicaid coverage in most states.^ Hence, DAPs funded by Title II can 
provide services to people infected with HIV who have incomes too high to become 
eligible for Medicaid coverage, strengthening the public-sector safety net for funding 
the care needed by people with HIV-related illness. 
Trends in Financial Eligibility 

The questionnaire asked if financial eligibility criteria for services provided by 
DAPs during 1995 have become more restrictive since 1993, providing responses of 
"more restrictive in 1995," less restrictive in 1995," or "remain the same." While 
financial eligibility for DAPs funded by Title II remained the same in most states, these 
criteria have changed in many states as Table 3-4 illustrates. The questionnaire also 
asked the AIDS program directors if they expected financial eligibility criteria for DAPs 
to become more restrictive during 1996. The AIDS program directors in most states 
reported that financial eligibility criteria are expected to remain the same during 1996, 
as Table 3-4 presents. 



53 



Table 3-4 

Drug Assistance Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Trends in Financial Eligibility and Waiting Lists for Eligit>ility 





Compared to 1993, 
Financial Eligibility 
Criteria for DAP in 

1995 have Become: 


During 1996 
Rnancial Eligibility 
Criteria for DAP is 
Expected to Become: 


Do DAP Eligibility 

Determination 
Procedures Include 
Spend Down? 


Is There a Waiting 
List of People for 
DAP Eligibility 
During 1995? 


If There is a DAP Waiting List, 
Estimate the Following for 1995: 


Number of People 
on the Waiting List 


Length of Time 
on the Waiting List 


Alabama 


remained the sanne 


remain the same 


no 


yes 


100 people 


60 days 


Alaska 


more restrictive 
in 1995 


remain the same 


rw 


no* 

•There are "p 


not applicable 
eople who cannot get 
1 to lack of [Title II] fui 


not applicat>le 
mods covered 
ids." 


Arizona 


less restrictive in 1995 


remain the sanrte 


rw 


no 


not applicable 


not applkaible 


Arkansas 


remained the same 


remain the same 


yes 


yes 


rtot avaiiat>le 


not availat>le 


California* 


remained the same 


remain the same 


no 


no 


not applicable 


not applicable 


Colorado 


less restrictive in 1995 


remain the same 


yes 


no 


not applk^able 


not applicable 


Connecticut* 


less restrictive in 1995 


remain the same 


yes 


no 


not applicable 


not applicable 


Delaware* 


more restrictive 
in 1995 


remain the same 


no 


yes 


5 people 


100 days 


District of 
Columbia* 


remained the same 


remain the same 


yes 


no 


not applicable 


not applicable 


Ftorida* 


remained the same 


remain the same 


no 


no 


not applicable 


rtot applicat>le 


Georgia 


remairted the same 


remain the same 


no 


no 


not applk:able 


not applk:at>le 


Hawaii 


remained the same 


remain the sanoe 


no 


no 


not applk:at>le 


not applicable 


Idaho 


remained the same 


remain the same 


no 


no 


not applicable 


not applicable 


Illinois 


less restrKtive in 1995 


more restrictive in 1996 


no 


rK> 


not applicable 


not applicable 


Indiana 


remained the same 


remain the same 


no 


yes, beginning 
12/1/95 


approximately 
15 in 12/95 


open-erKied 


Iowa 


remained the same 


remain the same 


no 


no 


not applicable 


rrat applicable 


Kansas 


remairted the same 


remain the same 


no 


no 


not applicable 


not applicable 


Kentucky 


less restrictive in 1995 


remain the same 


no 


no 


not applicable 


not applicable 


Louisiana 


(no DAP - 'Drugs are covered through charity hospitals and emergency assistance via [Title II] cortsortia.") 


Maine 


less restrictive in 1995 


less restrictive in 1996 


no 


no 


not applicable 


not applicat>le 


Maryiano 


less restrictive in 1995 


remain the same 


no 


rM 


not applkxible 


not applicable 


Massachusetts 


less restrictive in 1995 


remain the same 


no 


no 


not applicable 


not applicat>le 


Michigan 


more restrictive in 1995. 


unknoywn - deperKis 
on funding level 


no 


rK> 


not applicable 


rKit applicable 


Minnesota 


remained the same 


remain the same 


yes 


no 


not applicat>le 


not applicable 


Mississippi 


remained the same 


remain the same 


no 


no 


not applk^able 


not applicat>le 


Missouri 


less restrictive in 1995 


nrrare restrictive in 1996 


no 


no 


not applk:able 


not applicable 


Montana 


remained the same 


rennain the same 


no 


no 


not appiicat>le 


not applicable 


Nebraska 


remained the same 


more restrictive in 1996 


yes 


no 


not applkxible 


not applicable 



54 



Table 3-4 

Daig Assistance Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Trends in Financial Eligibility and Waiting Lists for Eligibility 





Compared to 1993, 

Pinarvnal PliniKtliK/ 

Criteria for DAP in 


During 1996 

FlnsifW^ial PluiiKilitv 

Criteria for DAP is 


Do DAP Eligibility 

DAitdimi nation 
1^X11 vi 1 • III rauvi 1 

Procedures Include 


Is There a Waiting 
DAP Eligibility 

L^UI II ly 1 f 


If There is a DAP Waiting List, 
Estimate the Foiiov^ng for 1995: 


Number of People 
on the Waiting List 


Length of Time 
on the Waiting List 


Nevada 


remained the same 


remain the same 


yes 


yes** 

**"T<v*hr%i^^ll\/ uio 
1 tn^i II 11(^11 y, vw 




do have the mechani 




cs for a waiting list.* 


New Hampshire 


remained the same 


remain the same 


yes 


rto 


not applkxible 


not applicable 


New Jersey* 


remained the same 


renrtain the same 


no 


no 


not appllcat>ie 


not applicable 


New Mexico 


more restrictive in 1995 


more restrictive in 1996 


no 


rK> 


rwt applicable 


not applicable 


NewYoric* 


remained the same 


remain the sanrra 


no 


no 


not applicable 


not applicabte 


North Carolina 




ADAP funded virith 


state nwney - no Titit 


1 II furxis. 






North Dakota 


less restrictive in 1995 


remain the same 


no 


no 


not applicable 


not applicable 


Ohio 


remained the same 


remain the same 


yes 


no 


not applicable 


not applicable 


Oklahoma 


more restrictive in 1995 


remain the same 


yes 


no ("But we are 

aiiiii^i^ifciiii ly wiN7. 


not applicable 


not applicable 


Oregon 


remained the same 


remain the same 


no 


no 


not applKable 


not applkxit>le 


Penrtsyivania 


Not applKable - Pennsylvania 
1 


uses no Title II funds 


to support the state 


wide ADAP program. 




Rhode Island 


no response to the survey 
1 










South Carolina 


"Based on poverty le 


vels, adjusted yearly.* 


no 


yes 


200 


6-8 months 


South Dakota 


remained the same 


remain tfte same 


no 


no 


rwt applKable 


not applicable 


Tennessee 


less restrictive in 1995 


remain the same 


no 


no 


not applicable 


not applicable 


Texas 


remained the same 


remain the same 


yes - but cost of 
medications only 


no 


not applicable 


rK>t appllcat>le 


Utah 


remained the same 


remain the same 


no 


no 


rK>t applicable 


not applicable 


Vermont 


remained the same 


remain the same 


yes 


no 


not applicable 


not applicable 


Virginia 


remained the same 


remain the same 


yes 


no 





not applicable 


Washington 


remained the same 


remain the same 


no 


no 


not applicable 


not applicabie 


West Virginia 


remained the same 


remain the same 


no 


no 


not applicable 


not applicable 


Wisconsin 


more restrictive in 1995 


remain the same 


no 


no 


not applicable 


not applicable 


Wyoming 


remained the same 


more restrictive in 1996 


no 


no 


not applicable 


not applicable 


^States with the highest Incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators, Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Financing Administration. U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



55 



Spend Down Procedures 

The questionnaire asl<ed tlie AIDS program directors if eligibility determination 
procedures for DAPs funded by Title II include a spend down provision. Spend down 
was defined on the questionnaire as "allowing the applicant to deduct the cost of 
medical care from income levels and using this medical-cost adjusted income level for 
eligibility determination." (Most state Medicaid programs allow spend down when 
determining Medicaid eligibility.^) As Table 3-4 documents, most states do not 
include spend down provisions in the determination of financial eligibility for DAPs 
funded by Title II. 
Waiting Lists 

The questionnaire asked if there was a waiting list of people in their state 
waiting to receive benefits from DAPs funded by Title II during 1995. If there was a 
waiting list, the AIDS program directors were asked to estimate both the number of 
people currently on the waiting list at the time of the survey and the number of days a 
person had to wait to receive benefits during 1995. Based on the survey responses, 
Alabama, Arkansas, Delaware, Indiana, and South Carolina reported that there were 
people waiting to receive DAP coverage, with the wait as long as six to eight months in 
South Carolina, in addition, Alaska noted that in that state there are "people who 
cannot get [medications] covered due to the lack of [Title II] funds." Oklahoma 
anticipates implementing a waiting list in the future. Nevada reported that the DAP in 
that state has the mechanics in place for a waiting list, although no one was waiting 
for DAP coverage at the time of the survey. 



56 



Coordination with Medicaid 

Although the CARE Act specifies that Title II funds must be the payer of last 
resort, Title II programs can supplement Medicaid coverage if Medicaid does not cover 
a needed health service or if a recipient's care needs exceed Medicaid utilization limits. 
The state Medicaid programs and Title II programs can coordinate services to provide 
a continuum of care and eliminate duplication of services, serving the care needs of 
people with HIV diseases more efficiently.** ^ State Title II programs also can 
access Medicaid eligibility information, allowing them to determine if Title 11 
beneficiaries are also eligible to receive Medicaid coverage.^ If Title 11 recipients are 
determined to be Medicaid eligible, CARE Act resources can then be used to provide 
medications to other low income people with HIV or AIDS.^^ 
Title li/Medicaid Utilization Limits 

The questionnaire asked the AIDS program directors if the Medicaid program in 
their state "limits utilization of the prescription drug benefit (e.g., 5 prescriptions per 
month), does the HIV/AIDS DAP funded by Title II in your state cover the prescription 
drug use in excess of the Medicaid limits?" To facilitate responses, the questionnaire 
provide "yes," "no," and "no Medicaid drug utilization limits" as possible responses. As 
Table 3-5 documents, the DAP funded by Title II in many states did not cover needed 
prescriptions in excess of Medicaid utilization limits. The DAP in South Carolina did 
assist Medicaid patients with AIDS/HIV obtain medications after they exhausted their 
Medicaid benefit of three prescriptions per month, but the DAP had to "suspend this 
policy due to lack of funds." 



57 



Table 3-5 

Drug Assistance Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Coordination with the State Medicaid Program 





Is Eligibility for DAP Coordinated with Eligibility 
for the state Medicaid Program? 


Does DAP Cover Drug Use in 
Excess of Any Medicaid Dnjg Limits? 


Alabama 


yes - a person receiving Medicaid coverage is ir>eligible 
for DAP 


no 


Alaska 


yes - case managers assist people with Medicakl 
application; DAP does not cover anything Medicaid covers 


no Medicakl drug utilization limits 


Arizona 


no 


no Medicakl dmg utilizatbn limits 


Arkansas 


yes - "If the client is Medbaid eligible, the most expensive 
drugs (and there can only t>e 3) are placed on the Medicakl 
card. The consortia either pays [for other drugs] directly 
or finds additional funding sources." 


yes 


California^ 


"Yes, if a person is eligible for Medrcakl, they are rvA 
eligible for ADAP." 


yes 


Colorado 


"If a client has prescriptkxi coverage through Medicaki, 
he/she is not eligible for our drug assistance program." 


no 


Connectkjuf^ 


yes - only people not eligible for Medicakl or people 
waiting for Medicaid eligibility can be on DAP 


no Medicakl drug utilization limits 


Delaware^ 


yes - case managers work to assure that Medkakl- 
eligible clients are placed on Medicaid 


no Medicakl drug utilizatk>n limits 


District of 
Columbia^ 


yes - the DAP "will have an ACEDS terminal so that clients 
can t>e removed from [DAP] upon Medicaid determination. 
Also, in the past the Medk^akl offk^e has partk^pated in 
the development of the [DAP] program." 


no 


Ftorida'^ 


yes - a client that is eligible for Medicakl is not eligible 
for the DAP in Florida 


no Medicaid drug utilization limits 


Georgia 


yes - "proof of documentation of income" 


no 


Hawaii 


no 


ves 


Idaho 


no 


no 


Illinois 


yes - "Program applicants are assisted in applying for 
Medkskl benefits, if eligible. Program partk:ipants are 
monitored for enrollment in Medicaid." 


no 


Indiana 


yes - "We verify/monitor Medk:akl status monthly. If they 
are put on Medicaid, they are taken off ADAP." 


no - "1 dont know if there are limits, but 
we dont have people in both programs." 


Iowa 


no 


no answer 


Kansas 


yes 


yes 


Kentucky 


yes - if client is Medicakl eligible, he/she is not 
eligible for DAP. 


rra Medicaki dmg utilization limits 


Louisiana 


no DAP - "Dmgs are covered through charity hospitals 
and emergency assistance via [Title II] consortia." 


"consortia might" 


Mair)e 


yes - the DAP in Maine accesses the MedkakI screen 
to determine eligibirity and/or reimbursement 


no 


Maryland'^ 


yes - "Applbant must indk:ate on applicatk>n if he/she is not 
Medicakl eligible. Persons eligible for Medk^aid are not 
eligible for MADAP." 


no 


Massachusetts 


no 


no Medicaid drug utilization limits 


Mk:higan 


yes 


no 


Minnesota 


yes - "We screen applicants for Medicaid eligibility arxl 
refer there if appropriate. We have access to Medk^aid 
eligibility files to verify [eligibility]. 


no Medk:akl drug utilizatk>n limits 


Mississippi 


yes - covers prescription drugs in 
excess of Medicaid limit 


yes 


Missouri 


yes - check Medk^kl eligibility at time of enrollment 


no Medkaid drug utilization limits 



58 



Table 3-5 

Drug Assistance Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Coordination with the State Medicaid Program 





Is Eligibility for DAP Coordinated with Eligibility 
for the state Medicaid Program? 


Does DAP Cover Drug Use in 
Excess of Any Medicaid Drug Limits? 


Montana 


yes - "client may be accepted on a provisional basis, but 
must apply for and be declared ineligible for MedicakI 
within 90 days." 


no answer 


Nebraska 


yes - all applicants checked for Medicaid 
enrollment at application 


no Medicaid drug utilization limits 


Nevada 


yes - shared electronic verificatkm with 
eligibirity computer link. 


no 


New Hampshire 


"HADAP eligit}ility is reviewed riKNithly akxig with Medicaid, 
eligibility. Medk^aid eligibles are removed from HADAP eligibility." 


no Medk:akl drug utilization limits 


New Jersey'^ 


yes - DAP, Medicaid, and Phannaceutk:al Assistance to 
Aged and Disabled applications screened by Medicaid 


yes 


New Mexico 


no 


no Medk:aki drug utilization limits 


NewYork'^ 


yes - "All applicants are checked for Medicaid enrollment 
at applicatbn and periodically thereafter. Denied if Medk^aid 
enrolled. Medk:aid application encouraged. Program 
assists with meeting Medicaid spend down requirement." 


no Medk:akl drug utilization limits 


North Carolina 


"ADAP funded with state money - no Title 11 funds." 


"ADAP funded witii state money - 
no Title 11 funds." 


North Dakota 


yes - Ryan White is payer of last resort. 


yes 


Ohk) 


yes - "We have clients on HADAP who are not yet 
Medicaid eligible." 


yes (but rK>t sure) 


Oklahoma 


yes - 'Case managers coordinate tiie drugs offered on the 
HADAP with the 3 Rxs available tiirough Medicaid." 


yes 


Oregon 


"Yes - ADAP is provider/payer of last resort." 


yes 


Pennsylvania 


"Not applicable - Pennsylvania uses no Title II furnJs to support the statewide ADAP program." 


Rhode Island 


no response to the survey 


no 


South Carolina 


no 


no 


South Dakota 


yes - 'If people are eligible for Medk:akl, Medicaid pays 
for their drugs." 


no MedicakI drug utilization limits 


Tennessee 


yes - DAP vwil ncH cover what TennCare (Medk:akl) covers 


yes, but TennCare has 
no drug utilization limits 


Texas 


yes - DAP will cover mediations in excess 
of the Medicaid limit 


yes 


Utah 


yes 


no Medk^aid drug utilization limits 


Vermont 


no 


no Medicaid dmg utilization limits 


Virginia 


yes - 'A person on the HADAP must be declared ineligible 
for Medicaid." 


no 


Washington 


yes - DAP 'assists clients in meeting their Medicaid 
spend down." 


no Medicaid drug utilization limits 


West Virginia 


yes - "Person applies at MedicakJ office and automatically 
is eligible when in Medicaid spend down." 


no Medk:aki dmg utilization limits 


Wisconsin 


yes - "Computerized [Medicaid] client database is 
available in AIDS/HIV program to cross-check eligibility." 


yes 


Wyoming 


yes - as soon as client is on Medkaid, Medk:akj 
payments for prescription dmgs begin. 


yes 


^States with the highest incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



59 



Title II /Medicaid Eligibility Coordination 

The questionnaire asked the AIDS program directors if eligibility for the DAP is 
"coordinated with eligibility for Medicaid in your state?" As Table 3-5 indicates, DAP 
eligibility is coordinated with Medicaid eligibility in most states. Many states reported 
that this Medicaid/DAP eligibility coordination guarantees that Title II is the payer of 
last resort. The DAPs in a number of states noted that they cover prescription drug 
needs in excess of the Medicaid limits implemented in those states. The AIDS 
program directors in Washington State and West Virginia reported that the DAPs in 
these states assist clients who are in the process of spending down to Medicaid 
eligibility. 

Summary and Discussion 

Public programs, particularly the state Medicaid programs, pay for the health 
services provided to most people with AIDS and a significant percentage of people 
infected with HIV.^ However, the Medicaid programs establish restrictive eligibility 
criteria, requiring during 1993 that incomes be below $434 per month in most 
states.^ Programs funded by the Ryan White CARE Act provide services to people 
with AIDS and HIV infection with higher income levels, broadening and strengthening 
the public-sector safety net for financing HIV-related health care. This paper focused 
on the DAPs funded by Title II of the CARE Act, presenting data on DAP 
characteristics, medical and financial eligibility criteria for DAPs, and coordination of 
DAP/Medicaid eligibility. 

Most Title ll-funded DAPs had formularies, with the number of drugs included 
ranging as high as 191 medications in New York during 1995. The decision to add 
new drugs to the DAP formulary is made by a board, panel, or committee in most 

60 



states, with a number of states noting that the cost of medications or the availability of 
funds affects these decisions. Although it would allow health providers to prescribe 
the most appropriate drug therapies, the DAPs in some states do not allow the off- 
label use of medications. 

The study also identified the medical and financial criteria necessary for 
individuals to become eligible for DAPs. The study documents that the state Title 1! 
programs have established generous income eligibility standards for services provided 
by DAPs, especially when compared to Medicaid eligibility standards. Hence, DAPs 
funded by Title II can provide drug therapies to people infected with HIV who have 
incomes too high to become eligible for Medicaid coverage. The Title II programs 
strengthen the public-sector safety net for funding the care needed by people with 
HIV-related illness. 

Many states coordinate Medicaid/DAP eligibility to guarantee that Title II is the 
payer of last resort, helping the DAPs to serve other low-income people with AIDS or 
HIV who lack other coverage. DAPs funded by Title II in a number of states cover the 
prescription drug needs of Medicaid recipients with HIV or AIDS in excess of the 
Medicaid limits implemented in these states. DAPs also can provide drug coverage to 
people with AIDS or HIV who are In the process of becoming eligible for Medicaid 
benefits. 

Generous eligibility criteria and coverage of a broad array of medications by 
DAPs allow these Title II programs to strengthen the public-sector safety net for 
financing the care needed by people with HIV-related illness. DAPs funded by Title II 
provide needed medications to people with HIV disease before they become eligible 
for Medicaid or Medicare.'*^ (However, since Medicare generally does not cover 

61 



outpatient prescription drugs, the DAPs will continue to be an important source of drug 
coverage for lower-income people with HIV receiving Medicare benefits.) Generous 
eligibility criteria (or no income restrictions in some states), however, can become a 
double-edged sword. If federal funding for Title II programs is not sufficiently 
increased to keep up with the increasing number of people expected to receive 
benefits from Title II programs, or if future federal Medicaid reform allows the states to 
establish even more restrictive Medicaid eligibility standards, then the Title II programs 
may not be able to provide services for all eligible people. DAPs in a number of states 
reported the use of waiting lists. The DAP in South Carolina responded that due to 
the lack of funds it can no longer cover the drugs needed by Medicaid recipients with 
HIV or AIDS that exceed the drug utilization limits implemented by the Medicaid 
programs in that state. The DAP in Illinois reduced the number of covered drugs to 28 
on July 1, 1996 because of the high costs of medications provided.'*^ Given the 
encouraging results of the new protease inhibitors in treating HIV infection,*^ and the 
$12,000 to $15,000 annual cost of these and other drugs per person when used in a 
combination therapy or a "three-drug cocktail",^ the DAPs funded by Title II will face 
increasing fiscal pressures. In fact, some states are already tightening eligibility, 
reducing the number of covered drugs, or implementing copayments.** If federal 
funding for Title II programs in the future does not keep pace with the expected 
increase in the number of people eligible for Title II services, and the costs of services 
provided, then the public-sector safety net for financing HIV-related care will be 
weakened. 



62 



Acknowledgements: The primary author thanks the state AIDS program directors 
and the people on their staffs who took the time to answer the questionnaires that 
collected the data necessary for this research. Without their cooperation this study 
would not have been possible. 

This research was funded by the Health Care Financing Administration, U.S. 
Department of Health and Human Services (grant #18-P-90286/5-02). The views 
expressed in this paper are those of the author. No endorsement by the Health Care 
Financing Administration is intended or should be inferred. 



63 



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15. Pitchenik. A. and Fertel, D. Tuberculosis and Nontuberculosis Mycobacterial Disease." Med 
gin North Am . 1992;76: 121-171. 

16. Palazzolo, G. "CMV Experimental Treatment Overview (Part 1)." AIDS Treatment News . 15 
January 1993: 1-8. 

17. Moore, R. and Chaisson, R. "Natural History of Opportunistic Disease in an HIV-infected Urt)an 
Qinical Cohort." Annals of Intemal Medicine . 1996;124:633-642. 

18. Graham, N., et al. "Access to Therapy in the Multicenter AIDS Cohort Study, 1989-1992." 
Joumal of Clin Eoidemiol . 1994;47: 1003-1011. 

19. Buchanan, R. and Smith, S. "Medicaid Policies for HIV-Related Prescription Drugs." Health Care 
Financing Review . 1994;15: 43-61. 

20. Colligen, B. (ed.) Pharmaceutical Benefits Under State Medical Assistance Programs . (Reston, 
VA: National Pharmaceutical Council, Inc., 1992). 

21. Lasagna, L The FDA and New Drug Development: Before and After 1962." 
Perspectives in Biology and Medicine . 1989;32: 323-343. 

22. Laetz, T. and Silt>erman, G. "Reimbursement Policies Constrain the Practice of Oncology." 
Joumal of the American Medical Association . 1991;266: 2996-3000. 

23. Nightingale, S.L "Use of Drugs for Unlabeled Indications." American Family Physician . 1986;34: 
269. 

24. Food and Drug Administration. "Use of Approved Drugs for Unlabeled Indications." FDA Drug 
Bulletin . 1982; 12: 4-5. 

25. American Society of Hospital Pharmacists. "ASHP Statement on the Use of Medications for 
Unlabeled Uses." American Joumal of Hospital Pharmacy . 1992;49: 2006-2008. 

26. Laetz, T. arxJ Silbemian, G. "Reimbursement Policies Constrain the Practice of Oncology." 
Joumal of the American Medical Association . 1991;266: 2996-3000. 

27. See note 19. 

28. McEvoy, G.K. (ed.) AHFS Drug Information (Bethesda, MD: American Society of Hospital 
Pharmacists, 1993). 

29. Dunbar, M. "Shaking Up the Status Quo: How AIDS Activists Have Challenged Drug 
Development and Approval Procedures." Food. Drug, and Cosmetic Law Joumal . 1991;46: 673- 
705. 



65 



30. Edgar, H. and Rothman, D.J. "New Rules for Drugs: The Challenge of AIDS to the Regulatory 
Process." The Milbank Quarteriv . 1990;68: 111-142. 

31 . See note 3. 

32. Buchanan, R. "Medicaid Eligibility Policies for People with AIDS." Social Work in Health Care 
Vol.23,No.2(1996): 15-41. 

33. See note 32. 

34. See note 3. 

35. Buchanan, R. "Medicaid Policies for Home Care and Hospice Care Provided to 
Medicaid Recipients with AIDS," AIDS and Public Policy Journal Vol. 10, No. 4 
(1996): 221-237. 



36. see note 3. 

37. See note 3. 

38. Schur, C. and Berk, M. Health Insurance Coverage of Persons with HIV-Related Illness: Data 
From the ACSUS Screener. AIDS Cost and Services Utilization Survey (ACSUS) Report. No.2. 
AHCPR Pub. No. 94-0009. (Rockville, MD: Agency for Health Care Policy and Research, 1994). 

39. See note 32. 

40. For a person with HIV illness to become eligible for Medicare requires meeting eligibility criteria 
for Social Security Disability Insurance (SSDI), including disability status, sufficient work-related 
history, and a 29-month waiting period (5 months from disability status for SSDI payment to 
begin, then 24 additional months for Medicare coverage to begin). (See Baily, M., Bilheimer, L, 
Woolridge, J., Langwell, K., and Greenberg, W. "Economic Consequences for Medicakl of 
Human Immunodeficiency Virus Infection." Health Care Financing Review (1990 Annual 
Supplement): 97-108. 

41. Wood, P. "Irony of AIDS Drugs Tough to Swallow." The Champaicn-Urbana News-Gazette. July 
14, 1996, pp. A1, A10. 

42. Altman, L. Scientists display substantial gains in AIDS treatment. The New York 
Times . July 12, 1996, pp.1, A9. 

43. Winslow, R. Health insurers and HMOs say they'll pay for new AIDS drugs. 

The Wall Street Journal . July 12, 1996, pp. A3, A6. 

44. McGinley, L States Move to Ration Promising AIDS Drugs. The Wall Street Joumal . August 22, 
1996, pp. B1, B6. 



66 



Chapter 4 

Home and Community-Based Care Funded by Title II of the Ryan White CARE Act^ 

Introduction 

The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act (Public 
Law 101-381) was enacted in August, 1990 to improve both the quality and availability 
of care for people with HIV disease and their families.^ The original legislation 
authorized: grants to metropolitan areas with the largest number of AIDS cases to 
help provide emergency services (Title i); grants to the states to improve the quality, 
availability, and organization of health and related support services (Title II); grants to 
state health departments for AIDS early intervention services (Title lll-a) and 
community-based primary care facilities (Title lll-b); and grants for research and 
evaluation initiatives, including demonstration programs for pediatric AIDS research 
(Title IV) Title 11 of the CARE Act allows states to allocate funds among any or all of 
four areas to: cover home-based health services, provide medication and other 
treatments, continue private health insurance coverage, or fund HIV care consortia.^ 
The objective of this paper is to identify how the states are using Title II funds to 
implement home and community-based care programs. The paper identifies states 
that have implemented home and community-based care programs with Title II funds, 
the home and community-based services offered, medical and financial eligibility 
criteria, and coordination with the state Medicaid programs. 

Methodology 

To identify how the states are using Title II funds to implement home and 
community-based care programs, state AIDS program directors were surveyed. The 



"Published in AIDS & PUBLIC POLICY JOURNAL, Vol. 12, No. 1, 1997. 

67 



names and addresses of these directors in each state were obtained from the National 
Alliance of State and Territorial AIDS Directors.'* In addition, the address file was 
updated with the names and addresses of AIDS program directors obtained from the 
Health Resources and Services Administration of the federal government.^ 
Survey Process 

A home and community-based care questionnaire was mailed to these AIDS 
program directors in May, 1995. Three additional mailings of the questionnaires were 
sent to the states not participating in the survey. When the survey was completed in 
early 1996, AIDS program directors (or their staffs) in 49 states and the District of 
Columbia provided data (no reply was received from Rhode Island). The survey 
responses were summarized Into tables and mailed to the AIDS program directors for 
verification and updates in April, 1996. Updates and any additional information 
received during the verification process were added to the final tables used in this 
paper. 

Incidence of AIDS 

The incidence of AIDS and HIV infection varies widely among the states. Since 
the focus of this paper Is the implementation of home and community-based care 
programs funded by Title II during 1995, state-level AIDS rates per 100,CXX) population 
for 1995 were used to put state-level policies for home and community-based care 
programs into the context of the incidence of AIDS. The map for male 
adults/adolescent AIDS annual rates was used for this study to present the incidence 
of AIDS throughout the United States, with each state assigned to one of our four 
AIDS-incidence categories.^ To illustrate the incidence of AIDS throughout the United 
States, the states were classified according to reported cases: highest incidence of 

68 



Table 4-1: 

Categorization of tlie States by AIDS Incidence Rates for Males (1995) 



LOW INCIDENCE (Less than 25.0 cases per 100,000 population): Alaska, Arkansas, 
Idaho, Iowa, Indiana, Kentucky, Maine, Minnesota, Montana, Nebraska, New 
Hampshire, New Mexico, North Dakota, Ohio, Oklahoma, South Dakota, Utah, 
Vermont, West Virginia, Wisconsin, and Wyoming. 



MEDIUM INCIDENCE (25 - 49.9 cases per 100,000 population): Alabama, Arizona, 
Colorado, Illinois, Kansas, Massachusetts, Michigan, Mississippi, Missouri, North 
Carolina, Oregon, Pennsylvania, Rhode Island, Tennessee, Virginia, and Washington. 



HIGH INCIDENCE (50 - 74.9 cases per 100,000 population): Georgia, Hawaii, 
Louisiana, Nevada, South Carolina, and Texas. 



HIGHEST INCIDENCE (75 and over cases per 100,000 population): California, 
Connecticut, Delaware, District of Columbia, Florida, Maryland, New Jersey, and New 
York. 



69 



AIDS (75 or more AIDS cases per 100,000 population); high incidence (50 to 74.9 
AIDS cases per 100,000 population); medium Incidence (25 to 49.9 AIDS cases per 
100,000 population) or low incidence (0 to 24.9 AIDS cases per 100,000 population). 
Table 4-1 summarizes the categorization of the states by the incidence of AIDS. 
Home and Community-Based Care Programs 

Table 4-2 presents the states that did not implement home and community- 
based care programs with Title II funds during 1995. However, as Table 4-2 illustrates, 
HIV consortia funded by Title II provided home and community-based services in 
many of these states. The states that reported implementing home and community- 
based care programs with Title II funds during 1995 are presented in Table 4-3.^ 
Home and Community-Based Services 

The questionnaire asked the AIDS program directors to describe the services 
covered by the home and community-based care programs funded by Title 11 during 
1995. To facilitate responses, the questionnaire offered a listing of 15 home and 
community-based services along with a response of "other (please describe)," with a 
request to circle any that apply. The 15 home and community- 
based care listed on the questionnaire are: 

durable medical equipment homemaker services 

home health services personal care services 

day treatment and partial hospitalization home intravenous therapy 

aerosolized drug therapy in-home diagnostic testing 

dental services home hospice care 

mental health, development, and rehab services case management 
transportation to health care child care services 

HIV prevention education for families other (please describe): 



70 



Table 4-2 

States Not Implementing Home and Community-Based Care Programs 
Funded by Title II of the Ryan White CARE Act during 1995 





The Home and Community-Based Care Services Funded by Title II During 1995: 


Alab£UTia 


The Title II program in Alabama did not have a Home and Community-Based Care Program in 1995, 
but the consortia program did cover home and community-based services. 


Alaska 


The Title II program in Alaska did not have a Home and Community-Based Care Program in 1995 

due to insufficient funds. 


Arizona 


The Title II program in Arizona did not have a htome and Community-Based Care Program in 1995, 
but the consortia program did cover home and community-based services. 


Arkansas 


The Title II program in Arkansas did not have a Home and Community-Based Care Program in 1995. 


Colorado 


The Title II program in Colorado did not have a Home and Community-Based Care Program in 1995, but the 
consortia program did cover home and community-based services. 'Some [consortia[ treat it like any 
any other Ryan White service area; others do not provide it at all.* 


Connecticut^ 


The Title II program in Connecticut covered many home and community-based services 
through the Ryan White consortia program in 1995. 


rionda 


ine iitie ii program in nonaaoia not nave a nome ana uommunrty-basea uare rrogram in 1995. utner iitie ii 
programs, such as the consortia, covered home and community-tiased services in Rorida based on an assessment 
of individual need. The Medicaid AIDS Waiver provides these services on a statewide basis. 


Hawaii 


The Title II program in Hawaii did not have a Horn: and Community-Based Care Program in 1995. 


Maho 


The Title II program in kjaho did not have a Home and Community-Based Care Program in 1995. 


Illinois 


The Title II program in Illinois did not have a Home and Community-Based Care Program in 1995, 
DUT local 1 me ii consoma may proviue nome ano communny-uaseu serviwos. 


Indizma 


The Title II program in Indiana did not have a Home and Community-Based Care Program in 1995. 


k>wa 


The Title II program in towa did not have a Home and Community-Based Care Program in 1995. 


Missouri 


The Title II program in Missouri did not have a Home and Community-Based Care Program in 1995. 


Montana 


The Title II program in Montana did not have a Home aind Community-Based Care Program in 1995. 


Nebraska 


The Title II program in Nebraska did not have a Home and Community-Based Care Program in 1995. 
(However, similar services are available from the Nebraska Department of Social Services.) 


North Carolina 


Home and community-based services funded by Title II were provided through consortia 
in North Carolina during 1995 and may be provided on a state-level during 1996. 


North Dakota 


The Title II program in North Dakota did not have a htome and Community-Based Care Program in 1995. 


Oregon 


The Title II program in Oregon did not have a Home and Community-Based Care Program in 1995, 
but local Title II consortia provided home and community-based services. 


Pennsylvania 


Not applicable because Pennsylvania does not administer these programs directly with Title II funds. 
[Individual consortia may provide these services in Pennsylvania.] 


Rhode Island 


no response to the survey 


South Carolina 


The Title II program in South Carolina did not have a Home and Community-Based Care Prograun in 1995, 
but local Title II consortia may provide home and community-based services as needed. 


Texas 


The Title II program in Texas did not have a separate Home and Communrty-Based Care Program in 1995, 
but home and community-based services were combined with Trde II HIV Care Consortia. 


Vermont 


The Title II program in Vermont did not have a Home and Community-Based Care Program in 1995. 


Virginia 


The Title II program in Virginia did not have a Home £ind Community-Based Care Program in 1995. 
However, some consortia cover this care. 


West Virginia 


The Title II program in West Virginia did not have a Home and Community-Based Care Program in 1995. 


Wisconsin 


The Title II progrzim in Wisconsin did not have a Home and Community-Based Care Program in 1995. 


^States with the highest incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



71 



The services provided by the home and community-based care programs 
funded by Title II in the states and the District of Columbia are summarized in Table 4- 
3. In addition to the home and community-based care services listed on the 
questionnaire, a number of states reported coverage of other services as well. Among 
these other home and community-based care services provided during 1995 were: 
food and housing assistance, ophthalmic services, psychosocial counseling, benefits 
counseling, nutritional counseling and supplements, home-delivered meals, RN visits 
and assessments, physical and occupational therapy, professional nursing services, 
day care, respite care, primary medical care, advocacy services, food banks, early 
intervention services, rural initiatives, spiritual counseling, and escort services for 
health care staff visiting clients in high crime areas. 
Trends in Services Offered 

The questionnaire asked the AIDS program directors to compare the number of 
services offered by the home and community-based care programs in their state 
during 1995 to the number of services covered in 1994. As Table 4-4 illustrates, about 
one half of the states with home and community-based care programs funded by Title 
II reported that the number of services remained the same and the rest of the states 
reported the number of services increased in 1995, with no states reporting a 
decrease. The questionnaire also asked the AIDS program directors to estimate how 
the number of home and community-based care services expected to be offered in 
their state during 1996 compares to the number of services covered in 1995. As Table 
4-4 presents, the AIDS program directors in most states reported that the number of 
services provided by Title II home and community-based care programs is expected to 
remain the same in 1996, with increases expected in a few states. The number of 

72 



Table 4-3 

Home and Community-Based Care Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Home and Community-Based Services 





The Home and Community-Based Care Services Funded by Title II During 1995: 


California* 


durable medical equipment, home health services, mental health sen/ices, transportation to health care, 
HIV prevention education for femilies, homemaker .services, personal care services, home intravenous therapy, 
in-home diagnostic testing, home hospice care, case management, food and housing assistance, 
psychosocial counseling, benefits counseling, nutritional counseling and supplements, and home-delivered meals 


Delaware* 


durable medKal equipment, home health services, day treatnrtent and partial hospitalizatkm, 
aerosolized drug therapy, dental services, mental health servKes, transportation to health care, ophthalmic 
sennces, homemaker services, personal care services, home intravenous therapy, and in-home diagnostic testing 


District of 
Columbia* 


durable medical equipment, home health servk»s, homemaker senrices, personal care services, 
home intravenous therapy, physical and occupational therapy services, and professional nursing services 


Georgia 


case management 


Kansas 


durat>le medical equipment, home health services, day treatment and partial hospitalization, 
aerosolized drug therapy, homemaker services, personal care services, home intravenous ttierapy, 
in-home diagnostic testing, and home hospice care 


Kentucky 


durable medical equipment, home health services, dental services, mental health services, transportation to 
health care, HIV secondaiy prevention education for families, homemaker services, personal care services, 
home intravenous therapy, irvhome diagnostic testing, home hospice care, case management, 
day/respite care, primary medical care, advocacy services, and food t>ank 


Louisiana 


duratile medical equipment home health services, aerosolized drug therapy, mental health services, 
personal care services, home intravenous therapy, in-home diagnostic tesbng, and home hospice care 


'Other services are funded with State money from the Department of Health and IHospitals.* 


Maine 


noiTro noaiui sefvicvs, aoiosoiizBa qiuq moiapy, ooiiuii sorvicos, irroniai noann sorvi^os, uansponaoon 
to health care. HIV prevention education for families, homemaker services, personal care services. 

■ luiitt? lilUaWimuo UnTlapy, lir^iioriw Ukayim^U^ UT^Uiiy, alnj UciaV iTldilayoiiHTili 


'Under contract. Title II funds case management agencies statewkie to provkto linkage 
to many services covered under Home and Community Based Services.' 


^4aryland* 


durat)le medical equipment, home health services, aerosolized drug therapy, mental health services, transportatkm 
to health care, homemaker servk»s, personal care services, home intravenous therapy, and home hospice care 


Massachusetts 


homemaker services 


Michigan 


durable medical equipment, home health sennces, dental services, mental health services, transportation 

to health care, homemaker services, personal care services, home intravenous therapy, in-home 
diagnostic testing, home hospice care, case management, child care, and secondary preventk>n services 


*These are not all consklered eligible servrces through the HCBC program but 
are covered by some consortia through consortia activities.' 


Minnesota 


dental services, mental health services, transportation to health care and social services, 
families, homemaker and personal care services (maintenance only), case management early intervention, 
rural initiatives, complementary services, information and referral, emergency monetary assistance, and day care 


Mississippi 


aerosolized drug therapy and home intravenous ttterapy 


Nevada 


home health services, dental services, mental health services, transportation to health care, HIV preventk>n 
educatran for families, homemaker services, persoivil care sennces, home intravertous therapy, 
home hospice care, case management delivered meals, spiritual counseling, and housing assistance 


New Hampshire 


durat>le medical equipnnerTt home health services, day treatment artd partial hospitalization, aerosolized 
drug therapy, mental health, devek)pment artd rehab services, homemaker services, personal care services, 
home intravenous ttierapy, in-home diagnostic testing, and case management 


New Jersey* 


durak>le medical equipment day treatment services, aerosolized drug therapy, mental health services, 
homemaker services, personal care sennces, home intravenous therapy, in-home diagnostic testing, case 
management and escort services for professional and paraprofessional staff visiting clients in high crime areas 


New Mexico 


durable medical equipment home health servk:es, aerosolized drug therapy, transportation to health care, 
HIV prevention education for families, homemaker services, personal care services, home intravenous therapy, 
in-home diagnostic testing, case management arKi child care 


New York* 


durable medical equipment home health services, day treatment services, homemaker services, 
personal care services, home intravenous therapy, and in-home diagnostic testing 


North Carolina 


medical care, menfal health counseling, homemaker services, hospice care, home-delivered 
meals, HIV support groups, personal care, nursing care, subsfance atHise services, 
adult day care, transportatk)n services, case maruigers, chikl care, podiatry services, derrtal care, 
home health services, respite care, t>enefits advocacy, housing referrals, and legal services 


(Home and community-t)ased services were provided during 1995 through consortia 
and may be provided on a state-level during 1996.) 


Ohio 


durat>le medical equipment home health services, homemaker services, personal care services, 
home hospice care, RN visits, and RN assessments 


Oklahoma 


durable medical equipmerrt home health services, menfal health services, HIV prevention education for families, 
homemaker services, personal care services, home hospice care, and case management 


South Dakota 


durat)le medical equipment home health services, day treatment and partial hospifalization services, 
aerosolized drug therapy, menfal health services, personal care services, and case management 


Tennessee 


case management 
fEleven different services were implemented on January 1 , 1996.") 


Utah 


durable medical equipment homemaker services, personal care services, in-home diagnostic testing, 
case management IV drug therapy, and skilled nursing 


Washington 


denfal services, transportation to health care, homemaker services, personal care services, and case management 


'Home care is provided on a personal care basis with home health/nursing from Medicaid and insurance.' 


Wyoming 


durable medkail equipment aerosolized drug therapy, denfal services, transporfation to health care, 
menfal health services, home intravenous therapy, and case management 


*States with the highest incidence of AIDS. 


Source: Robert J. Buchanan. Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators, Title II of the Ryan White CARE Act This research was funded by a grant from the 
Health Care Financing Administration, U.S. Department of Health and Human SerAces (grant # 18-P-90286/5-01). 



services covered by the home and community-based care program in Kentucky was 
expected to decrease and Michigan responded that the Title II home and community- 
based care program may be discontinued in that state during 1996. 
Effective Home and Community-Based Care Services 

The questionnaire asked the AIDS program directors to list the services that are 
most effective at meeting the care needs of people with HIV that were covered by the 
home and community-based care program in their state during 1995. The responses 
are summarized in Table 4-4. Among the most frequently mentioned effective home 
and community-based care services are: case management, personal/attendant care, 
homemaker/chore services, home I.V. therapy, and transportation. 

Title 11 Beneficiaries and Eiigibility Policies 

The Ryan White CARE Act did not establish income restrictions for individuals to 
receive benefits from Title 11 programs, although the statute did specify that CARE Act 
programs must be the payer of last resort.® Given the absence of federally-set 
income standards for eligibility, the states have the ability to establish there own 
financial eligibly criteria for Individuals to receive Title II benefits. The survey asked the 
AIDS program directors to provide: the number of people receiving services from 
home and community-based care programs funded by Title II; medical and financial 
eligibility criteria for services offered by home and community-based care programs; 
trends in financial eligibility criteria; spend down procedures for eligibility; and any use 
of waiting lists. 

People Receiving Home and Community-Based Care Benefits 

The questionnaire asked the AIDS program directors to estimate at the time of 
the survey (mid 1995) the number of people in their state receiving services from 

74 



Table 4^ 

Home £md Community-Based Care Progreims Funded by Title II of the Ryan White CARE Act during 1995: 

Home and Community-Based Services 





Compared to 1994, the 
Number of H&CBC Services 
Covered During 1995 has: 


During 1996 the 
Number of H&CBC Services 
Covered is Expected to: 


The Most Effective H&CBC Services 
at Meeting the Health Care 
Needs of People with HIV: 


California^ 


increase in 1995 
(due to addition of 
nutrition services) 


remain the same 


Comprehensive Nurse Case Management (using 
the Interdisciplinary Team approach, both nurse 
and social worker) and attendant care 


Delaware^ 


remain the same 


remeun the same 


homemaker, day treatment, dental services, 
and ophthalmic sen/ices 


District of 
Columbia^ 


remain the same 


remain the s£tme 


Home Health/Personal Care aide services 


Georgia 


remain the same 


increase in 1996 


none mentioned 


Kansas 


increase in 1995 


remain the same 


home health aide 


Kentucky 


increase in 1995 


decrease in 1996 


home health services, mental health therapy, primary 
care, dental care, case management, and transportation 


Louisiana 


remain the same 


remain the same 


skilled nurse for I.V., home health aide, and 
personal care attendant 


Maine 


remain the same 


remain the same 


case management 


Maryland 


remain the same 


remain the same 


skilled nursing, in-home HIV therapies, personal care, 
and chore services 


Massachusetts 


remain the same 


remain the same 


homemaker services 


Michigan 


incre£ise in 1995 


no coverage in 1996 


personal care/chore services 


Minnesota 


increase in 1995 


remain the same 


case management, transportation, early intervention, and 
headth insurance continuation ("although not a 
"home care' program") 


Mississippi 


remain the same 


remain the same 


aerosolized drug therapy and home I.V. therapy 


Nevada 


increase in 1995 


remain the same 


transportation to care, housing assistance, home hospice, 
ase management, personal care services, and homemake 


New Hampshire 


remain the same 


remain the same 


varies by client need/status 


New Jersey^ 


increase in 1995 


remain the same 


routine and specialized nursing home hesilth aide, 
homemaker and personal care attendant services 


New Mexico 


increase in 1995 


increase in 1996 


homemaker/personal care services 


NewYorir 


increase in 1995 


increase in 1996 


'Home health aides account for 73% of the cost of the HIV 
Home Care Program Services. All services are pre- 
authorized based on medical needs justification." 


North Carolina 


remain the same 


remain the same 


personal care and respite care 


(Home and community-based services were provided during 1995 through consortia 
and may be provided on a state-level during 1996.) 


Ohio 


remain the same 


remain the same 
(uncertain) 


homemaker services, home health aide, and supplier 


Oklahoma 


increase in 1995 


increase in 1996 


personal and skilled care 


South Dakota 


remain the same 


remain the same 


home health care 


Tennessee 


increase in 1995 


increase in 1996 


"We only offer case managers during 1995." 


Utah 


remain the same 


remain the same 


personal care and homemaker services 


Washington 


remain the same 


remain the same 


case management, dental care, pharmacy assistance, 
and home care 


Wyoming 


increase in 1995 


increase in 1996 


"Case management - case managers are advocates, 
mothers, and a source of human caring." 


^States with the highest incidence of AIDS. 




Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators, Title II of the Ryan White CARE Act. This research was funded by a grauit from the 
Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



75 



home and community-based care programs funded by Title II, with these estimates 
presented in Table 4-5. The questionnaire also asked the AIDS program directors to 
estimate how the number of these people receiving home and community-based 
services in their state during 1995 compared to the number of people receiving 
services in 1994. As Table 4-5 presents, the AIDS program directors in most states 
estimated that the number of people receiving services from the home and 
community-based care programs funded by Title II increased in 1995 compared to 
1994. In addition, the questionnaire asked the AIDS program directors to estimate 
how the number of people receiving home and community-based care services in their 
state during 1995 compared to the number of people expected to receive these 
services during 1996. As Table 4-5 illustrates, the AIDS program directors in most 
states expect the number of people receiving services provided by home and 
community-based care programs funded by Title II to increase during 1996. 
Medical Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide medical 
eligibility requirements in their state for people to receive home and community-based 
services funded by Title II during 1995. As the Table 4-5 documents, most states 
responded that the individual must be HIV positive to meet medical eligibility 
requirements. Many states have implemented additional medical criteria, typically 
relating to physical dependency or requiring assistance with activities for daily living. 
For example, medical eligibility criteria for services provided by home and community- 
based care programs funded by Title II in California require that a person be 
"symptomatic HIV or AIDS and need assistance in at least one area of functioning." 
Similarly, in the District of Columbia a person must be non-ambulatory "with non-acute 

76 



Table4^ 

Home and Community-Based Care Programs Funded by Title II of the Ryan White CARE Act during 1995: 

Benefictaries and Eligibility Policies 





Estimates of the Number of People 
Receiving HCBS 
from ttte Title II Program: 




To be Finartcially Eligible for 
HCBS, Gross Monthly Irtcome 
during 1995 Cannot Exceed: 




Medwal 
Eligibility 
Requirements 
for HCBS 


Compared to 1993, 
Financial Eligibility 
Criteria for HCBS in 
1995 have Become: 


1995 


1995 Compared 
to 1994 


1996 Compared 
to 1995 


1-Person 
HousehokJ 


4-Person 
HousehoM 


Califomia'^ 


530 


remain the 
same 


remain the 
same 


• 






remain the same 


"SymptomatK HIV or AIDS and need assistance in at least one area of functk>ning (Kamofsky [scale] of 70 or less).* 
*n4o income requirements. Majority are km income in spend down for Medi-Cal (Medk»ki], or are on Medi-Cal but no! yet eligible 

for the AIDS Medi-Cal Waiver.' 


Delaware* 


107 


increase in 1995 


increase in 1996 


HIV+ 


$613.33/month 


$2,281/month 


more restrKtive in 1995 


District of 
Columbia* 


53 


increase in 1995 


remain the 
same 




notapplKable 
CHow«ver, 


notapplwable 
the program 


not applk»it>le 


****Non-ambulatory patients with noiv-acute conditions related to HIV disease wtto are 
jnable to receive outpatient primary med»al care, but do not require [institutional care]. 


targets kwv-income underserved 
and uninsured people.* 


Georgia 


45 


increase in 1995 


increase in 1996 


no answer 


noansvwr 


rtoartswer 


no answer 


Kansas 


44 


no answer 


increase in 1996 


HIV+ 


300% of federal poverty level 


less restrictive in 1995 


Kentucky 


U87 


increase in 1995 


increase in 1996 


HIV-I-, with 
documented 
need for servKes 


$22,410/year | $4S,45Qi^yaar 
(300% of federal poverty level) 


less restrictive in 1995 


Louisiana 


200 


irtcrease in 1995 


increase in 1996 




$1,245/month| $2,525/month 


less restrictive in 1995 


-Determination of the need for home-based care is completed by a physician. 


Maine 


400+ 


iitcrease in 1995 


increase in 1996 


HIV+ 


no inconrtc 


) gukJelirtes 


remain the same 


Maryland* 


170 


increase in 1995 


remain the 
same 


HIV-*- plus rrteet 
medwal criteria 
for home health 
(ADL assistance) 


$709^month 
(State siklii 
but no one c 
for inabil 


$1,47S/month 
itg scale fee, 
lenied sennce 
ity to pay.) 


more restrictive in 1995 


Massachusetts 


450 


increase in 1995 


remain the 
same 


HIV+ 


$27,00a/year 


$37,000/year 


less restrictive in 1995 
(increased to $27,QOu/yr.) 


MKhigan 


60 


irtcrease in 1995 


decrease in 1996 


They are being revised. The HCBC program 
may be discontinued.* 


"No, until very 
recently." 


Minnesota 


1.500 


increase in 1995 


increase in 1996 


no medical 
eligibility criteria 


$1,867/month 1 $3,787/month 
(300% of federal poverty leveO 


remain ttte sante 


Mississippi 


84 


increase in 1995 


increase in 1996 


prescribed by 
physKtan 


$1,245/month 


$2.52S/month 


remain ttte sante 


Nevada 


215 


increase in 1995 


increase in 1996 


determined kx»liy 
by health districts 


determined 
kically 
(gerterally 
of federal r 


determined 
ktcally 
up to 300% 
(overty teveO 


less restrictive in 1995 


New 
Hampshire 


40 


remain the 
same 


remain the 
same 


no answer 


$14,940/year $30,500/year 


remain the same 


New Jersey* 


510 


increase in 1995 


remain the 
same 


diagnosis of 
HIV/AIDS 


$2.500/month 


$5,000/month 


remain the same 


New Mexico 


250 


increase in 1995 


increase in 1996 


partKipant in case 
management and 
taking at least orte 
dmg on formulary 


$1,869/ntonth 


$1.869/month 


more restrictive in 1995 


New York* 


1,360 


increase in 1995 


increase in 1996 


AIDS or HIV symp- 
tomatK illrtess & 
chronk; medial 
dependency 


$3,666/month 


$6,200/month 


remain ttte same 


North Carolina 


3,000 
(Home 


increase in 1995 
1 and community-based i 


irtcrease in 1996 
»rvKes were provkled di 


HIV+ 

jring 1995 through consc 


SIkling scale reimbursentent 
)rtia and ntay be provided on a sti 


remain the sante 
]te-level during 1996.) 


Ohk> 


25 


increase in 1995 


increase in 1996 


HIV■^ 


$1,374/month 


$3,435/month 


remain ttte same 


Oklahoma 


SO 


increase in 1995 


irtcrease in 1996 


none rrtentkxted 


$934/ntonth 


$1,894/month 


more restrictive in 1995 


South Dakota 


20 


remain the 
same 


remain ttie 
same 


HIV-t- 


$1,867/month 


$3,787/month 


remain the sante 


Tennessee 


200 


not applicable 


increase in 1996 


HIV-i- 


No finartcial criteria for 
any servwe — 


not applicable — 


(louring 1995 only case managers were provkled. The state initiated 11 different services under H&CBC on January 1, 1996.*) 
— *Currentty ttiere are no financial restrictk>n. If a subcontractor does charge, they are required to use the sliding scale as determined by HRSA.* 


Utah 


35 


decrease in 1995 
(program admin- 
istration change) 


remain the 
same 


medically or 

chronkally 

dependent 


poverty level 


pov8fty lovol 


rentain the same 


Washington 


40 


remain the 
same 


rentainttie 
same — 


disabling HIV/ 
AIDS condition 


$1,246/month 


$2,466/month 


remain the same 


*Depends on community/regional needs assessments.* 


Wyoming 


38 


increase in 1995 


irtcrease in 1996 


unable to work 
and need ADL 
assistance 


$20,43(Vyear 


$41.850/year 


remain ttte same 


*States with the highest incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of stale 
program administrators. Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Financing Administratkxi, U.S. Department of Health and Human Services (grant « 18-P-90286/5-01). 



77 



conditions related to HIV disease who [is] unable to receive outpatient primary medical 
care, but [does] not require [institutional care]." 
Income Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide the maximum 
monthly income level an individual in a one-person household living in their state could 
have during 1995 to be eligible for the home and community-based care program. In 
addition, the AIDS program directors were asked to provide the maximum monthly 
income a family of four could have during 1995 for an individual within that family to be 
eligible for the home and community-based care program. These financial eligibility 
requirements reported by the states are presented in Table 4-5. A few states reported 
no income requirements for HIV infected people to receive services from the home 
and community-based care program funded by Title II. As Table 4-5 illustrates, even 
states that establish income ceilings for eligibility, set generous eligibility standards. 
This is particularly noticeable if income eligibility standards for services offered by the 
home and community-based care programs funded by Title II are compared to income 
eligibility standards for state Medicaid coverage (the largest payer of AIDS-related 
care.) For example, during 1993 most individuals with AIDS could not have incomes in 
excess of $434 per month to receive Medicaid coverage in most states.® Hence, 
home and community-based care programs funded by Title II can provide services to 
people infected with HIV who have incomes too high to become eligible for Medicaid 
coverage. The Title II programs strengthen the public-sector safety net for funding the 
care needed by people with HIV-related illness. 



78 



Trends in Financial Eligibility Criteria 

The questionnaire asked the AIDS program directors if financial eligibility criteria 
in their state for sen/ices provided by the home and community-based care program 
during 1995 have become more restrictive since 1993, providing responses of "more 
restrictive in 1995," less restrictive in 1995," or "remain the same." While financial 
eligibility for home and community-based care services funded by Title II remained the 
same in many states, these criteria have changed in a number of states as Table 4-5 
illustrates. The questionnaire also asked the AIDS program directors if they expected 
financial eligibility criteria for the home and community-based care programs in their 
state to become more restrictive during 1996. All the states (and the District of 
Columbia) responding to the survey that provided home and community-based care 
programs funded by Title II reported that financial eligibility criteria are expected to 
remain the same during 1996 except for four states. Financial eligibility criteria for the 
home and community-based care program in Wyoming, New Mexico, and Michigan^° 
are expected to become more restrictive in 1996 and Georgia did not answer this 
question. (Given the similarity of responses from most states, these data for 1996 are 
not reported in Table 4-5.) 
Spend Down Procedures 

The questionnaire asked the AIDS program directors if eligibility determination 
procedures in their state for services provided by home and community-based care 
programs include a spend down provision. Spend down was defined on the 
questionnaire as "allowing the applicant to deduct the cost of medical care from 
income levels and using this medical-cost adjusted income level for eligibility 
determination." (Most state Medicaid programs allow spend down when determining 

79 



Medicaid eligibility.^^) According to the survey responses, only the Title II programs 
in Maryland, North Carolina, Ohio, and Oklahoma include spend down provisions in 
the determination of financial eligibility for services provided by home and community- 
based care programs, while Minnesota reported it "depends on the program." The 
other states with home and community-based care programs funded by Title II either 
did not include spend down provisions in the eligibility process, or spend down was 
not applicable because the state had no income requirements for eligibility. (Given the 
similarity of responses from most states, these data for 1996 are not reported in Table 
4-5.) 

Waiting Lists 

The questionnaire asked if there was a waiting list of people in their state 
waiting to receive services from the home and community-based care program funded 
by Title II during 1995. If there was a waiting list, the AIDS program directors were 
asked to estimate both the number of people currently on the waiting list at the time of 
the sun/ey and the number of days a person had to wait to receive home and 
community-based services during 1995. Based on the survey responses, only the 
Title II program in California reported the use of waiting lists for home and community- 
based services, with 700 people waiting at the time of the survey. However, in 
California 'Ihose most in need (in advanced stages of HIV disease or unable to 
function without assistance) are seen or referred to the appropriate sources as soon 
as possible." In addition, Michigan responded that while there was no waiting list at 
the time of the survey, one may be implemented "in the very near future." (Given the 
absence of reported waiting lists in all other states, these data are not reported in 
Table 4-5.) 

80 



Coordination with Medicaid 

Although the Ryan White CARE Act specifies that Title II funds must be the 
payer of last resort, Title 11 programs can supplement Medicaid coverage if Medicaid 
does not cover a needed health service or if a recipient's care needs exceed Medicaid 
utilization limits. If a state Medicaid program does not cover hospice care, for 
example, a Medicaid recipient can receive that service through a program funded by 
the CARE Act, if available. Similarly, if a Medicaid recipient needs more home nursing 
visits then allowed by the state Medicaid program, programs funded by the CARE Act 
may pay for additional home nursing care.^^ 

The state Medicaid programs and Title II programs can coordinate services to 
provide a continuum of care and eliminate duplication of services, serving the care 
needs of people with HIV diseases more efficiently.^* A study by the National 
Governor's Association (NGA) examined how the state Medicaid programs and 
programs funded by Title 11 can coordinate to serve people with HIV and AIDS more 
effectively and efficiently.^^ Among the areas of collaboration identified by the NGA 
study are: planning and implementing home care services; administering drug 
reimbursement and assistance programs; administering health insurance continuation 
programs; cross-training between CARE Act and Medicaid programs; sharing 
information and protecting client confidentiality; planning, administering and staffing 
case management services; collaborating through CARE Act program meetings (e.g.. 
Title II statewide advisory committees); and outstationing Medicaid eligibility workers. 

The state Medicaid programs typically do not cover and reimburse the home- 
based, nonmedical social and support services often needed by people with AIDS and 
HIV disease. ^® The Medicaid Home and Community-Based Care Waiver 

81 



programs, however, allow the state Medicaid programs to reimburse medical and 
other support services provided in the home or community to people with AIDS who 
would otherwise need institutional care. The state Medicaid programs and the Title I 
and Title II programs funded by the Ryan White CARE Act can work together to 
design, develop, and implement these Medicaid Home and Community-Based Care 
Waiver programs.^® Developing these Medicaid waiver programs, and coordinating 
implementation with CARE Act programs, would allow CARE Act funds to be spent on 
alternative care as well as offer a broader array of home and community-based care 
services than many state Title II programs can offer due to funding constraints.^ 
Medicaid Home and Community-Based Care Waiver Programs 

There are two Medicaid Home and Community-Based Care Waiver programs 
that can be used to provide nonmedical, social, and support services to people with 
AIDS. Section 2176 of the 1981 Omnibus Budget Reconciliation Act gives the Health 
Care Financing Administration (the federal agency with responsibility for Medicaid 
administration) the authority to waive certain federal Medicaid regulations to allow 
states to cover home and community-based care targeted to specific groups of 
Medicaid recipients (such as the disabled) who otherwise would be institutionalized.^^ 
The Omnibus Budget Reconciliation Act of 1985 amended Section 2176 to allow AIDS- 
specific waiver programs for home and community-based care.^ The state Medicaid 
programs can use either the original waiver program for the elderly and disabled to 
provide special services to Medicaid recipients with AIDS because of their disability 
status, or the AIDS-specific waiver program. The expanded home and community- 
based care services covered through these waiver programs allow Medicaid programs 
to provide a broad array of medical, personal care, and other nonmedical and social 

82 



support services to people with AIDS in their homes. In addition to expanded 
coverage of services, these waiver programs also permit the states to establish less 
restrictive financial eligibility criteria for waiver services than used to establish eligibility 
for the regular Medicaid program, allowing more people with AIDS to receive care.^* 
Title ll/Medicaid Utilization Umits 

The questionnaire asked the AIDS program directors if the Medicaid program in 
their state "limits utilization of home-based care (e.g., 50 home health visits per year), 
do home and community-based care programs funded by Title II in your state cover 
the use of these services in excess of the Medicaid limits?" To facilitate responses, 
the questionnaire provide "yes," "no," and "no Medicaid utilization limits" as possible 
responses. As Table 4-6 documents, the home and community-based care programs 
funded by Title II in most states did cover needed services in excess of Medicaid 
utilization limits during 1995. 
Effective Title 11 /Medicaid Coordination 

The questionnaire asked the AIDS program directors to "describe effective 
methods and policies for the coordination and integration of the Medicaid program 
with the Title II program in your state." Table 4-6 summarizes their responses. In 
many states Title ll/Medicaid coordination involves assuring that Title II is the payer of 
last resort. In Louisiana, for example, the home health agency is required to verify if 
the patient has coverage by other third-party payers. In Maryland, Title II home care 
providers also must be approved as Medicaid providers and bill Medicaid for any 
covered health care that is provided. In New Jersey and Wyoming case managers 
assist Title II beneficiaries with the Medicaid eligibility process, while in Mississippi the 
Title II coordinator serves as the gatekeeper for the coordination of Title II benefits with 

83 



Table 4-6 

Home and Community-Based Care Programs Funded by TiUe II of the Ryan White CARE Act during 1995: 
Coordination with the State Medicaid Program 





Do H&CBC Sendees Funded 
by Title II Cover the Use of Services 
in Excess of Any Medicaid Limits? 




Effective M^hods and Policies for the 
Coordination of Medicaid and Title II 


Barriers to ttie Coordination 
of Medk:aid and Title II 


California* 


• 


• 




"California has an AIDS Medi-Cal [Medicaid] Waiver Program ttiat provides comprehensive nurse case managemerrt, home and 
community-t>ased care to people living with HIV/AIDS who would otherwise require institutional care (Kamofsky [scale] of 60 or less). 
The Office of AIDS contracts with county health departments and community-t>ased organizations who are certified as AIDS Waiver 
providers. These agencies subcontract with k>cal home health agencies and other appropriately liceitsed agencies to provide direct 
patient care. Title II funding is used to augment an existing state program, the AIDS Case Management Program, which also 
provides nurse case management and home and community-based care to people with mid to late stage HIV/AIDS (KarrK)fsky of 70 or 
less). The Office of AIDS contracts with 37 providers for this program, most of which are also AIDS Waiver providers. Having contracts 
for both programs allows for continuity of care for individuals as they t>ecome eligit>le for the [Medicaid] AIDS Waiver. Clients on the 
AIDS Waiver cannot be enrolled simultaneously in ttie AIDS Case Management Program, which prevents duplication of sennces. 


**n'here may be some lack of coordination t>etween [Trtte II and] California's Medi-Cal Program [Medicaid].* 


Delaware* 


yes 


quarterly meetings: E-mail 


none 


District of 
Columbia* 


'On August 15, 1995the Agency for 
HIV/AIDS requested information from 
the HCFA conceming this issue.* 


*The position of Home Health Coordinator at 
D.C. CARE will be designed to coordinate 
services across funding streams.' 


'OnAugustIS, 1995 ttie Agency for 
HIV/AIDS requested information from 
the HCFA conceming this issue.' 


Georgia 


not applicable 


rx>ne mentioned 


none mentioned 


Kansas 


yes 


no answer to the question 


'Both programs try to coordinate with each 
ottierwtien possible.' 


Kentucky 


*Yes - t>ased on [Title II] funding 
availability. We are willing to cover 
the cost of home health visits when- 
ever these services are not 
available through Medicaid.* 


'Anytime a client is eligit>le for services or benefits 
(e.g., drugs, health services, etc.) through Medi- 
caid, that makes them ineligit>le for those same 
services or benefits from the Title II programs. 
The programs have worked together to avoid 
duplicatk>n of services.' 


'The programs are separate and situated in 
different departments, so t>ureaucracy some- 
times makes things more difficult than they 
shouki t>e, or at least stows down interactkm. 
However, on ttie wtiole. ttiere is good com- 
municatton b^ween the programs. Some- 
times, the fact that we are in different depart- 
ments means that arent as aware of ttie 
changes taking place in each ottier's programs.' 


Louisiana 


"Yes, that is a primary goal we 
[Title iq provide gap coverage.* 


*At the time of referral, the home health agency 
is required to verify ttie extent of coverage by any 
arKi all third party payers. They must track visits 
and provkie morrthly summary of visits 
remainirtg.* 


'The greatest barrier is effective communka- 
tk>n conceming status tietween HPO and 
home health agency. Clients dont always 
know they have Medicaid, there is a delay 
b^ore acceptance is granted, and record 
keeping is very lat>or intensive.* 


Maine 


no Medicaid utilization limits 


*AIDS Targeted Case Management is a Medicakl 
reimbursat>le servKe: Medicakl Waiver for 
home-t>ased care cun-ently being sought* 


*Lack of front line communication between 
case managers and Medk:a'id efigibility 
workers.* 


Maryland* 


yes 


'Medicakl staff partk:ipate in Maryland AIDS 
Policy Workgroup; Tide II vendors are required 
to be approved as Medicaid provklers and 
must bill [MedKakl] for covered servk:es: 
Title 11 staff also provklo AiDS-related expen- 
diture analyses for Medicaid, are devek>ping 
a cooperative quality assurance program, 
and are working with Medicaid HMO staff in 
training and delivery issues.' 


none 


Massachusetts 


no 


'Medicakl does not cover these 
[homemaker] services.' 


no answer to the questton 


Michigan 


*We have not alkx:ated any additional [Title II] resources to home health other ttian those expended in April, 1 995. This was due to 

a significant shorten in Title II resources in Michigan.* 


Minrtesota 


yes 


"We subcontract drug, insurance, and dental 
programs with the state welfare agency.' 


*None, ottier ttian increasing demand and 
tiealth care/wel^re reform uncertainties.* 


Mississippi 


yes 


'Coordinator has 8 years experience as a Medi- 
cakl specialist Coordinator serves as the gate- 
keeper for coordination of t>enefits with Medicaid.' 


'Lack of cooperatkx) from Medk^akJ program.' 


Nevada 


no 

(this has not t>een an issue) 


*Ttie Medicakl AIDS Coordinator is a memt)er 
of the State AIDS Task Force (by appointment 
in the by-laws), and this keeps Medwaid a steady 
member of ttie team. We also share an electronic 
verification of eligit>ility system with Medicaid ttiat 

assists in getting clients on the [Title II drug 
program] without delay. Case workers for Medi- 
cakl and CBOs receive updates and information 
from Ryan White and Medicaid.* 


*The real barriers are the scope of coverage 
and time lags t>ased on state law. Instituttonal 
tiarriers are not significant' 


New Hampshire 


yes 


'One case manager for Title II and Medk:aid. 
Medicaid pays for this individual.' 


Lack of personnel. 



84 



Table 4-6 

Home and Community-Based Care Programs Funded by Title II of the Ryan White CARE Act during 1995: 
Coordination with the State Medicaid Program 





Do H&CBC Services Funded 
by Title II Cover the Use of Services 
in Excess of Any Medicaid Limits? 




Effective Methods and Policies for the 
Coordination of Medicaid and Title II 


Barriers to the Coordination 
of Medicaid and Title II 


New Jersey* 


yes 


"The HIV Home Care Program is a short term 
program in which the case manager places 
the client on the program while seeking out 
Medicaid entitlements for the client* 


'One barrier is the cumbersome [Medicakl] 
paperwork which increases the length of time 
from the dienfs assessment [for eligibility] to 

actual enrollmerrt into a Medicaid program.' 


New Mexico 


yes 


to utilize all Medicaid dollars; utilize other funds; 
use HIV/AIDS waiver funds 


MedicakJ eligibility doesn't always remain; 
providers reluctant to bill additioral funding 
sources; system not s^ up for 
constant interaction. 


New York* 


no Medicaid utilization limits 


an individual is ineligible for HIV Home Care if 

covered t>y Medicaid; eligibility coordinated 
through EMEVS at intake and at each recertif)- 
cation; by policy HIV Home Care services 
coverage is less than Medicaid to encourage 
transition to Med'icakl; if a person has Medicaid 
sperxfcjown requirements, the HIV Uninsured 

Care Programs will pay for medical care 
up to the spenddown requirement each month 


"There is a need for a monthly electronic 
eligibility verification match for improved 
efficiency in preventing dual enrollment* 
*NOTE: a weekly match began 4/96.* 


North Carolina 


yes 


The AIDS Care Branch has an interagency 
agreement with Medicakl to manage the Medi- 
cakl HIV case management program and the 
Medicaid AIDS Home and Community-Based 
Care services waiver.* 


no answer to the question 


(Home and community-based services were provided during 1995 through consortia and may t>e provided on a state-level during 1996.) 


Ohio 


yes (uncertain) 


*As soon as PWA are Medicaid eligible, 
(esp. clients in ADAP), we suggest they sign up 
for MedKakJ. We have [Medicak!] spend- 
down in Ohio so some dierrts are not 
MedicakJ eligible, but are eligible for ADAP. 

When they meet sperKkknvn or become 
Medicaid el'igitile, we have Human Services 
reimburse our ADAP. We work with Human 
Services to be sure our ADAP prices are in 
line. We have access to Human Service's 
database. We make sure that ADAP and 
[Medicaid] cover the same medications." 


'Medkakl sperKldown - d'iffk:ult to 
urKlerstand and difficult for some clients 
to meet [the sper>dddown requirements], 
wtiere clients go on and off Medicaid.* 


Oklahoma 


yes 


no answer to this question 


limited MedicakJ-covered services; reorganiza- 
tion of state Medicaid agency; and budget cuts 


South Dakota 


yes 


no answer 


no ar^swer to this question 


Tennessee 


yes, *we can use [Tide 11] for any- 
thing [Medicaid] does rtot cover.* 


*ln Jaruiary, 1994 we dropped Medicakj and implemented TennCare - a managed care plan. 
The vast majority of ttiose with HIV are eligible fbr coverage. Prior to this, we had 100% of our 
[Title II] money in drug assistance. During early 1 995 a net*/ [state] administration took over ar>d 
the entire Ryan White program is being restructured under new directors. Thus barriers/positives 

are yet unkrwwn.* 


Utah 


no Medicaid utilization Kmits, 'but we 
do supplement Medicaid services 
and they must be cost-effective 
compared to institutional care.* 


'Up until this year the drug therapy program 
(state and kxal funds) was administered 
through Medkakl.' 


*Medicakj has no mandate to coordinate; 
therefore other priorities within [Medicaid] 
teke precedence.* 


Washington 


yes 


"Very separate in Washington. Actual 
servKes are coordinated where eligibility 
and coverage for care must be clarified.' 


They are administered by two differerrt 
agencies. Medicakl is the Department of 
Social and Health Services and Title II is l>y 
kx^al AIDSNET regional entities ak>ng with 
the Department of Health.' 


Wyoming 


'Probably r>ot - [Title II] receives 
only limited funding.' 


'As soon as the client signs up for Ryan White, 
the case manager sits down and outlines pro- 
cedures for getting Medicakl, even helping 
to fill out the paperwork.' 


rto answer to this question 


^States with the highest incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators, Title II of the Ryan White CARE Act This research was funded by a grant from the 
Health Care Hnancing Administration, U.S. Department of Health and Human Services (grant* 18-P-90286/5-01). 



85 



Medicaid coverage. In North Carolina the AIDS Care Branch (Title II) has "an 
interagency agreement with Medicaid to manage the Medicaid HIV case management 
program and the Medicaid Home and Community-based services waiver." The Title II 
program in New Mexico reported that it utilizes HIV/AIDS waiver funds. 

In California the Title II program contracts with organizations that also are 
certified as providers for the Medicaid AIDS waiver program for home and community- 
based care. Title II funding also supplements an existing state program (AIDS Case 
Management Program) that provides nurse case management and home and 
community-based care services to people with mid to late stage HIV/AIDS. Most of 
the providers for this state program are also Medicaid AIDS waiver providers. 
Because the Title II program has contracts with providers that also serve the Medicaid 
AIDS waiver program and the AIDS Case Management Program, continuity of care is 
not interrupted for most individuals as they become eligible for the Medicaid AIDS 
waiver program. To promote continuity of care as people become Medicaid eligible, 
as well as help assure that Title il is the payer of last resort, the home and community- 
based care programs funded by Title II should contract with Medicaid-certified service 
providers. 

Barriers to Title ll/Medicaid Coordination 

The questionnaire asked the AIDS program directors to "describe any barriers 
to the coordination and integration of the Medicaid program with the Title II program in 
your state." As Table 4-6 presents, one barrier to coordination and integration results 
from administration of the two programs by different state agencies. AIDS program 
directors in other states noted that the Medicaid eligibility/application process is 

86 



difficult and time consuming, while other directors mentioned limited Medicaid 
coverage of services. 

Summary and Discussion 

Public programs, particularly the state Medicaid programs, pay for the health 
services provided to most people with AIDS and a significant percentage of people 
infected with HIV.^ However, the Medicaid programs establish restrictive eligibility 
criteria, requiring during 1993 that incomes be below $434 per month in most 
states.^ Programs funded by the Ryan White CARE Act provide services to people 
with AIDS and HIV infection with higher income levels, broadening and strengthening 
the public-sector safety net for financing HIV-related health care. This paper focused 
on the home and community-based care programs funded by Title II of the CARE Act, 
presenting data on the home and community-based services covered, medical and 
financial eligibility criteria for these services, and coordination of the Title li programs 
with the state Medicaid programs. 

The study identified a range of home and community-based care services 
funded by Title II in various states during 1995. Among the most effective services 
identified by the study are: case management, personal/attendant care, 
homemaker/chore services, home I.V. therapy, and transportation. 

The study also identified the medical and financial criteria necessary for 
individuals to become eligible for home and community-based services. The study 
documents that the state Title II programs have established generous income eligibility 
standards for services provided by the home and community-based care programs, 
especially when compared to Medicaid eligibility standards. Hence, home and 
community-based care programs funded by Title II can provide services to people 

87 



infected with HIV who have incomes too high to become eligible for Medicaid 
coverage. The Title II programs strengthen the public-sector safety net for funding the 
care needed by people with HIV-related illness. 

Coordination of the Title II programs with the Medicaid Home and Community- 
Based Care Waiver programs will increase the range of services available to people 
with AIDS and HIV infection while conserving limited Title II resources. Contracting 
with Medicaid-certified providers of home and community-based services will allow the 
Title II programs to promote the continuity of care as patients become eligible for 
Medicaid, as well as help assure that Title II is the payer of last resort. 

Generous eligibility criteria and coverage of a broad array of home health, 
personal care, and support services by the home and community-based care 
programs allows Title II and other CARE Act programs to strengthen the public-sector 
safety net for financing the care needed by people with HIV-related illness. Title 11 
programs provide needed care to people with HIV disease before they become eligible 
for Medicaid or Medicare.^ Generous eligibility criteria (or no income restrictions in 
some states), however, can become a double-edged sword. If federal funding for Title 
II programs is not sufficiently increased to keep up with the increasing number of 
people expected to receive benefits from Title II programs, or if future federal Medicaid 
reform allows the states to establish even more restrictive Medicaid eligibility 
standards, then the Title II programs may not be able to provide services for all eligible 
people. This could result in the use of waiting lists, reduced services, some other 
forms of rationing, or the implementation of more restrictive eligibility criteria. For 
example, financial shortfalls have jeopardized the home and community-based care 
program in Michigan. If federal funding for Title II programs In the future does not 

88 



keep pace with the expected increase in the number of people eligible for Title II 
services, then the public-sector safety net for financing HIV-related care will be 
weakened. 

Acknowledgements: The author thanks the state AIDS program directors and the 
people on their staffs who took the time to answer the questionnaires that collected 
the data necessary for this research. Without their cooperation this study would not 
have been possible. 

This research was funded by the Health Care Financing Administration, U.S. 
Department of Health and Human Services (grant #18-P-90286/5-02). The views 
expressed in this paper are those of the author. No endorsement by the Health Care 
Financing Administration is intended or should be inferred. 



89 



References 



1. U.S. Department of Health and Human Services, Information about the Ryan 
White Comprehensive AIDS Resources Emergency Act of 1990 (Rockvilie, MD: 
Bureau of Health Resources Development, August, 1993). 

2. McWnney, M.M., Wieland, M.K, Bowen, G.S., Goosby, E.P., and Marconi, KM. "States' 
Responses to Title II of the Ryan White CARE Act." Public Health Reports Vol.1 08.N0.I (19930: 4- 
11. 

3. Health Care Financing Administration, U.S. Department of Health and Human Services, Improving 
Coordination Between Medicaid and Title II of the Rvan White CARE Act (Baltimore, MD: Office of 
Legislative and Intergovemmental Afteirs, April 28, 1995). 

4. National Alliance of State and Territorial AIDS Directors, National Alliance of State and Territorial 
AIDS Directors - 1995 Directory (Washington, DC: 1995). 

5. U.S. Department of Health and Human Services, Health Resources and Services Administration, 
Bureau of Health Resources Development, Division of HIV Sendees, Rvan White CARE Act Title II 
State Contacts - FY 1995 Title II Contacts (Rockvilie, MD: September 28, 1995). 

6. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report. 1995; 7(no.2): 1-39. 
Figure 1: Male adult/adolescent AIDS annual rates per 100,000 population, for cases reported In 
1995, United States. 

7. Although North Carolina reported that Title II funds were not used in that state to Imf^ement a 
home and community-based care program, these services were provided by Title II HIV 
consortia. Data on the home and community-t)ased services provided by HIV consortia were 
included in North Carolina's response to the home and community-based care survey and these 
data are reported in Tables 3 through 6 of this paper. North Carolina may implement a state- 
level home and community-based care program using Title II funds during 1996. 

8. See note 3. 

9. Buchanan, R. "Medicaid Eligibility Policies for People with AIDS." Social Work in Health Care 
Vol.23,No.2(1996): 15-41. 

10. The home and community-based care program funded by Title II in Michigan may t>e 
discontinued during 1996 according to the survey response from that state. 

11. See note 9. 

12. See note 3. 

13. See note 3. 

14. See note 3. 

15. Buchanan, R. "Medicaid Policies for Home Care and Hospice Care Provided to 
Medicaid Recipients with AIDS." AIDS and Public Policy Journal . Vol. 10, 
No. 4 (1996): 221-237. 



90 



16. See note 3. 

17. See note 3. 

18. See note 15. 

19. See note 3. 

20. See note 3. 

21. Miller, N. "Medicaid 2176 Home and Community-Based Care Waivers." Health Affairs . Vol. 11, 
No. 4(1992): 162-171. 

Merzel, C, et al. "New Jersey's Medicaid Waiver for Acquired Immunodeficiency Syndrome." 
Health Care Financino Review . Vol. 13, No. 3 (1992): 27-44. 

22. Jacobson, P., Lindsey, P. and Pascal, A. AIDS-Spectfic Home and Communitv-Based Waivers 
for the Medicaid Population (Santa Monica, CA: Rand Corp., 1989). 

23. see Buchanan, R. "Medicaid Policies for Home Care and Hospice Care Provided to Medicaid 
Recipients with AIDS." AIDS and Public Policv Joumal . Vol. 10, No. 4 (1996): 221-237, Table 1 
for a listing of selected home and community-based services provided to people with AIDS 
through Medicaid waiver programs. 



24. See note 9. 

Also see Congressional Research Service. Medicaid Source Book: Background Data and 
Analvsis (A 1993 Update) (Washington, D.C.: U.S. Govemment Printing Office, 1993). 

25. Schur, C. and Berk, M. Health Insurance Coverage of Persons with HIV-Related Illness: Data 
From the ACSUS Screener. AIDS Cost and Services Utilization Survev (ACSUS) Report. No.2. 
AHCPR Pub. No. 94-0009. (Rockville, MD: Agency for Health Care Policy and Research, 1994). 

26. See note 9. 

27. For a person with HIV illness to become eligible for Medicare requires meeting eligibility criteria 
for Social Security Disability Insurance (SSDI), including disability status, sufficient work-reiated 
history, and a 29-month waiting period (5 months from disability status for SSDI payment to 
begin, then 24 additional months for Medicare coverage to begin). (See Baily, M., Bilheimer, L, 
Wooiridge, J., Langwell. K., and Greenberg, W. "Economic Consequences for Medicaid of 
Human Immunodeficiency Virus Infection." Health Care Financing Review (1990 Annual 
Supplement): 97-108. 



91 



Chapter 5 

Health Insurance Continuation Programs Funded by Title II 
of the Ryan White CARE Act^ 

Introduction 

The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act (Public 
Law 101-381) was enacted in August, 1990 to improve both the quality and availability 
of care for people with HIV disease and their families.^ The original legislation 
authorized: grants to metropolitan areas with the largest number of AIDS cases to 
help provide emergency services (Title I); grants to the states to improve the quality, 
availability, and organization of health and related support services (Title II); grants to 
state health departments for AIDS early intervention services (Title lll-a) and 
community-based primary care facilities (Title lll-b); and grants for research and 
evaluation initiatives, including demonstration programs for pediatric AIDS research 
(Title IV).^ Title li of the CARE Act allows states to allocate funds among any or all of 
four areas to: cover home-based health services, provide medication and other 
treatments, continue private health insurance coverage, or fund HIV care consortia.^ 

Background 

Among people living with AIDS who have private insurance, 71 percent had 
their coverage provided by their employers."* However, 50 percent of people who 
were employed before a diagnosis of HIV-related illness stopped working within two 
years of the onset of the first symptoms.^ As their illness progresses to the point 
where they stop working, employment-based, private health insurance may stop for 
people with AIDS just when their health care needs intensify. 

^Published in AIDS & PUBLIC POLICY JOURNAL, Vol. 12, No. 2, 1997. 

92 



t 

The Consolidated Omnibus Budget Reconciliation Act of 1985 (P.L 99-272) 
requires employers with 20 or more employees that offer a group health plan to 
continue that coverage for 18 months at the worker's expense (up to 102 percent of 
the premium) upon termination of employment.® The Omnibus Budget Reconciliation 
Act of 1989 (OBRA 89, P.L 101-239) provided for an extension of coverage at the 
worker's expense up to 29 months ( at up to 150 percent of the premium after the 
18th month) for people who have disabilities when employment was ended/ OBRA 
89 allows for the continuation of private health insurance coverage for workers forced 
to leave employment due to disability as they completed the 29 month waiting period 
before Medicare coverage begins.® 

However, with the end of employment, a person living with AIDS may not be able to 
afford these premiums and private health coverage would lapse. The objective of this 
paper is to identify how the states are using Title II funds to implement health 
insurance continuation programs. The paper identifies states that have implemented 
health insurance continuation programs with Title II funds, the health insurance options 
offered, and medical and financial eligibility criteria. 

Methodology 

To identify how the states are using Title II funds to implement health insurance 
continuation programs, state AIDS program directors were surveyed. The names and 
addresses of these directors in each state were obtained from the National Alliance of 
State and Territorial AIDS Directors.® In addition, the address file was updated with 
the names and addresses of AIDS program directors obtained from the Health 
Resources and Services Administration of the federal government. ^° 

93 



Survey Process 

A health insurance continuation questionnaire was mailed to these AIDS 
program directors in May, 1995. Three additional mailings of the questionnaires were 
sent to the states not participating in the survey. When the survey was completed in 
early 1996, AIDS program directors (or their staffs) in 49 states and the District of 
Columbia provided data (no reply was received from Rhode Island). The survey 
responses were summarized into tables and mailed to the AIDS program directors for 
verification and updates in April, 1996. Updates and any additional information 
received during the verification process were added to the final tables used in this 
paper. 

Incidence of AIDS 

The incidence of AIDS and HIV infection varies widely among the states. Since 
the focus of this paper is the implementation of health insurance continuation 
programs funded by Title II during 1995, state-level AIDS rates per 100,000 population 
for 1995 were used to put state-level policies for health insurance continuation 
programs into the context of the incidence of AIDS. The map for male 
adults/adolescent AIDS annual rates was used for this study to present the incidence 
of AIDS throughout the United States, with each state assigned to one of our four 
AIDS-incidence categories." To illustrate the incidence of AIDS throughout the 
United States, the states were classified according to reported cases: highest 
Incidence of AIDS (75 or more AIDS cases per 100,000 population); high incidence (50 
to 74.9 AIDS cases per 100,000 population); medium incidence (25 to 49.9 AIDS cases 
per 100,000 population) or low incidence (0 to 24.9 AIDS cases per 100,000 



94 



Table 5-1: 

Categorization of tine States by AIDS Incidence Rates for Males (1995) 



LOW INCIDENCE (Less than 25.0 cases per 100,000 population): Alaska, Arkansas, 
Idaho, Iowa, Indiana, Kentucky, Maine, Minnesota, Montana, Nebraska, New 
Hampshire, New Mexico, North Dakota, Ohio, Oklahoma, South Dakota, Utah, 
Vermont, West Virginia, Wisconsin, and Wyoming. 



MEDIUM INCIDENCE (25 - 49.9 cases per 100,000 population): Alabama, Arizona, 
Colorado, Illinois, Kansas, Massachusetts, Michigan, Mississippi, Missouri, North 
Carolina, Oregon, Pennsylvania, Rhode Island, Tennessee, Virginia, and Washington. 



HIGH INCIDENCE (50 - 74.9 cases per 100,000 population): Georgia, Hawaii, 
Louisiana, Nevada, South Carolina, and Texas. 



HIGHEST INCIDENCE (75 and over cases per 100,000 population): California, 
Connecticut, Delaware, District of Columbia, Florida, Maryland, New Jersey, and New 
York. 



95 



population). Table 5-1 summarizes the categorization of the states by the incidence of 
AIDS. 

Health Insurance Continuation Programs 

Table 5-2 presents the states that did not implement health insurance 
continuation programs with Title II funds during 1995. However, as Table 5-2 
illustrates, HIV consortia funded by Title II assisted with the continuation of health 
insurance in some of these states and other states reported that state-funded 
programs cover the continuation of health insurance. The states that reported 
implementing health insurance continuation programs with Title II funds during 1995 
are presented in Table 5-3.^^ 

The questionnaire asked the AIDS program directors if Title II funds were used 
during 1995 for the payment of: health insurance premiums, health insurance 
copayments or coinsurance, health insurance deductibles, or "other health insurance 
costs (please explain)." The health insurance continuation policies funded by Title II 
and implemented in the states are summarized in Table 5-3. As Table 5-3 illustrates, 
all of the states (except Wisconsin) used Title II funds to pay for health insurance 
premiums, with a few states paying deductibles and/or copayments or coinsurance as 
well. The Title II program in Minnesota responded that in addition to health insurance 
premiums, dental insurance was covered during 1995. The Title 11 program in 
Wisconsin reported that Title II funds were used during 1995 for the costs of 
administering the health insurance continuation program and state funds were used to 
pay the health insurance premiums. 



96 



i 



Table 5-2 

States Not Offering Continuity of Health Insurance Coverage 
Funded by Title II of the Ryan White CARE Act during 1995 





States Not Offering Continuity of Private Health Insurance Coverage 
Funded by Title II of the Ryan White CARE Act during 1995 


Alabama 


The Title II program in Alabama dki not offer assistance with private health insurance coverage during 1995 


Alaska 


The Title II program in Alaska offered assistance with private health insurance coverage through the consortia program 


Arizona 


The Title II program in Arizona did not offer assistance with private health irtsurance coverage during 1995 


Arkansas 


The Title II program in Arkansas offered assistance with private health insurance coverage 
through the consortia program 


Connecticut* 


Connecticut provkjes continuity of private health insurance through a state-furnled health insurance program 


District of 
Columbia* 


The Title II program in the District of Columbia dkl rwt offer assistance 
with private health insurance coverage during 1995 


Idaho 


The Title II program in Idaho dkl rtot offer assistarKo with private health insurance coverage durirtg 1995 


Indiana 


The Title II program in Indiana did not offer assistance with private health insurance coverage during 1995 


Iowa 


The Title II program in Iowa dkl not offer assistance with private health insurance coverage during 1995 


Maine 


The Title II program in Maine dki not offer assistance with private health insurance coverage during 1995 


ivMii jrioi m 


The Title II program in MarylarKi did not offer assistance with private health insurance coverage during 1995 
("Maryland has had a state-funded program to do this since 1990.*) 


Massachusetts 


The Title II program in Massachusetts dkl rtot offer assistar>ce with private health insurance coverage during 1 995 


Michigan 


Michigan provkles continuity of private health insurartce through a state-funded health insurarice program 


Mississippi 


The Title II program in Mississippi dkl rtot offer assistartce with private health insurar>ce coverage during 1995 


Missouri 


The Title II program in Missouri dkl not offer assistance with private health insurance coverage during 1995 


Nebraska 


The Title II program in Nebraska did not offer assistance with private health insurance coverage during 1995 


Nevada 


The Title II program in Nevada did rrat offer assistance with private health insurance coverage during 1995 


New Hampshire 


The Title II program in New Hampshire plans to implement coverage of insurance payments during 1996 as a 
cost reduction strategy for drug reimbursement. 


New Tone 


The Title II program in New York did not offer assistance with private health insurance coverage during 1995 


Norm v^roiina 


The Title II program in North Carolina did rrat offer assistance with private health insurance coverage during 1995, 


North Dakota 


The state legislature in North Dakota created a state fund for the continuation of private health insurance 


Ohio 


The Title II program in Ohk> dkJ rrat offer assistarrae with private health insurarrae coverage during 1995, 

but plarfs to do so during 1996 


Oklahoma 


The Title II program in Oklahoma dkl rrat offer assistance with private health insurance coverage during 1995 


Oregon 


The Title II program in Oregon dki irat offer assistarrae with private health insurance coverage during 1995, 
tHJt this program is under study for 1996 


Pennsylvania 


'Not applicable because Pennsylvania does rrat administer these programs directly with Title II funds.* 
[Individual consortia may provide these services in Pennsylvania.] 


Rhode Island 


rra response to the survey 


South Carolina 


HIV care consortia may provide this service in South Carolina, txit the Title II program in South Carolina did rrat fiind 

a separate health insurance program during 1995 


Tennessee 


The Title II program in Tennessee dkj rrat offer assistarrae with private health insurarrae coverage during 1995, 

although consortia may fiind this service. 


Texas 


These services are combined with Title II HIV Care cortsortia in Texas 


uian 


The Title II program in Utah did not offer assistarrae vi/ith private health insurarrae coverage during 1995, 
tHJt may during 1996 if there is increased funding 


VernK)nt 


A state^nded program in Vermont covers private health insurarrae continuatran 


Washington 


The Title II program in the State of Washington dkl not offer assistance with private health insurance coverage 
during 1995 (A state-funded program covers health insurance continuatk>n.) 


West Virginia 


The Title II program in West Virginia did rrat offer assistarrae v/ith private health insurance coverage during 1995 


'^States with the highest incidence of AIDS. 


Source: Rot>ert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



97 



Table &<3 

Health Insurance Continuation Funded by Title II of the Ryan White CARE Act during 1995: 
Beneficiaries and Eligibility Polictes 





Title II Funds Were 
Used During 1995 

to Pay for the 
FolkMving hlealth 
Insurance Coverage: 


Estimates of ttie Numt>er of People 
Receiving Private Health Insurance 
Benefits Funded by the Title II Program: 


Medical 
Eligibility 
Requirements for 

Private Health 
Insurance Benefits 


To be FirtarKially Eligit>le for 
Benefits, Gross Monthly Income 
during 1995 Canr>ot Exceed: 


1995 


1995 Compared 
to 1994 


1996 Compared 
to 1995 


1 -Person 
Household 


4-Person 
Household 


Alaska 


H.I. premiums 
(The Title III 


10 

>rogram in Al< 


slight irKrease 
in 1995 
iska offered assistar 


increase 
in 1996 
cewith private healt 


HIV+ 

1 insurance coverage iti 


'Low income' and unat>le to pay 
1 

rough the consortia program) 


Arkansas 


H.I. premiums and 1 200 1 increase 1 increase 1 HIV-f 
copay/coinsurance | | in 1995 | in 1996 | 

(The Title II program in Arkansas offered assistance with private health insurance coverage 


$12,580^rear | $25,520/year 
through the consortia program) 


California* 


H.I. premiums 


506 


increase 
in 1995 


remain the 
same 


disai>led & unatile 
to work full time 

Aha *a l.JI\//Air\C 

Que 10 niv/AiUo 


$1 ,557/month 


$3,157/month 


Cok>rado 


H.I. premiums 


26 


increase 
in 1995 


remain the 
same 


HIV+orAIDS 


$1,867/month 


$3,750/month 


Delaware* 


H.I. premiums and 
deductit>les 


15 


remain the 
same 


decrease 
in 1996 


HIV+ 


$1,134.67/month 


$2,281 .67/month 


Fterida* 


H.I. premiums 


716 


increase 
in 1995 


increase 
in 1996 


HIV symptomatic 
or AIDS 


$1,559/month 


$3,163/month 


Georgia 


H.I. premiums 


200 


increase 
in 1995 


increase 
in 1996 


diagnosis of 
HIV disease 


200% of federal 
poverty level 


200% of federal 
poverty level 


Hawaii 


H.I. premiums 


45/month 
82/year 
^95 per 
month/year) 


remain the 
same 


remain the 
same 


HIV-t- and unable 
to work (or cut 
hours) due to 

symptomatic HIV 


$2,115/month 


$4,254/month 


Illinois 


H.I. premiums 


175 


increase 
in 1995 


increase 
in 1996 


disabled due to 
HIV or diagnosed 
with AIDS 


$1,245/month 
(twice federal 
poverty leveO 


$2,525/month 


Kansas 


H.I. premiums 


14 


remain the 
same 


increase 
in 1996 


disabled due to 
HIV infection 


300% of federal 
poverty level 


300% of federal 
poverty level 


Kentucky 


H.I. premiums 


130 


increase 
in 1995 


increase 
in 1996 


HIV+ 


$22,410i^ear 


$45,450/year 


Louisiana 


H.I. premiums 


116 


increase 
in 1995 


increase 
in 1996 


disabled from HIV 
disease or AIDS 


$1,027/month 


$2,083/month 


Minnesota 


H.I. premiums and 
dental insurance 


139 


increase 
in 1995 


decrease* 
in 1996 


HIV+ 
(1996) 


$1,867.50/month 


$3,787.50/month 


"Enrollment in 1996 will significantly decrease t>ecause of a significant ir 
errtire insurance program will increase from 1995 to 1996 but pro 


tcrease of state funding for the program. Enrollment in our 
portionately less of it will be paid with Title II funds.' 


Montana 


H.I. premiums, 
copay/coinsurance, 
and deductit>les 


5 


remain the 
same 


remain the 
same 


HIV+ 


$623/month 


$1,263/month 


Ivlew Hampshire 


The Title II program in New Hampshire plans to implemerrt co\ 
cost reduction strategy for drus 


rarage of insurance payments during 1996 as a 
reimbursement 


New Jersey* 


H.I. premiums | 30** | not applic.** 


increase 
in 1996 


a diagrKJsis of 
AIDS/HIV+ 


$2,500/month 


$5,000/month 


**the program was recently implemented 


New Mexico 


H.I. premiums 


70 


increase 
in 1995 


increase 
in 1996 


participant in 
case management 


$1,246/month~ 




--betow200%of 
the federal poverty level 


South Dakota 


H.I. premiums, 
copay/coinsurarKe, 
and deductibles 


5 


increase in 
1995 


remain the 
same 


HIV+ 


$1.867.50/month 


$3,787.50/month 


Virginia 


H.I. premiums 


48 


increase in 
1995 


increase in 
1996 


doctor's statemer«t, 
COBRA policy 


$14,50Wyr.~~ 


$27,000/yr.~ 


-~bek>w200%of 
the federal poverty level 


Wisconsin 


Other 


85 
(1996) 


increase in 
1995 


increase in 
1996 


documentation of 
HIV+ 


$1,29Wmonth 
(1996) 


$2.600/month 
(1996) 


~~~Title II funds are used for the cost of administering insurar)ce programs (salary arxl associated position costs), 

state funds are used to pay the premiums 


Wyoming 


H.I. premiums, 
copay/coirtsurance, 
and deductibles 


4 


increase in 
1995 


increase in 
1996 


HIV+ 


$20,430/year 


$41,850/year 


*S1ates with the highest incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators. Title II of the R^n White CARE Act This research was funded by a grant from the 
Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



98 



Title 11 Beneficiaries and Eligibility Policies 

The Ryan White CARE Act did not establish income restrictions for individuals to 
receive benefits from Title II programs. Given the absence of federally-set income 
standards for eligibility, the states have the ability to establish there own 
financialeligibly criteria for individuals to receive Title II benefits. The survey asked the 
AIDS program directors to provide: the number of people receiving assistance from 
health insurance continuation programs funded by Title II; medical and financial 
eligibility criteria for benefits offered by the program; trends in financial eligibility 
criteria; spend down procedures for eligibility; and any use of waiting lists. 
People Receiving Health Insurance Continuation Assistance 

The questionnaire asked the AIDS program directors to estimate at the time of 
the survey (mid 1995) the number of people in their state receiving assistance from the 
health insurance continuation program funded by Title II, with these estimates 
presented in Table 5-3. The questionnaire also asked the AIDS program directors to 
estimate how the number of these people receiving assistance with health insurance 
continuation in their state during 1995 compared to the number of people receiving 
assistance in 1994. As Table 5-3 presents, the AIDS program directors in most states 
estimated that the number of people receiving assistance from the health insurance 
continuation program funded by Title II increased in 1995 compared to 1994. In 
addition, the questionnaire asked the AIDS program directors to estimate how the 
number of people receiving assistance with health insurance continuation in their state 
during 1995 compared to the number of people expected to receive this assistance 
during 1996. As Table 5-3 illustrates, the AIDS program directors in most states 



99 



expect the number of people receiving benefits from the health insurance continuation 
program funded by Title II to increase during 1996. 
Medical Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide medical 
eligibility requirements in their state for people to receive assistance with health 
insurance continuation funded by Title II during 1995. As the Table 5-3 documents, 
most states responded that the individual must be HIV positive to meet medical 
eligibility requirements. Many states have implemented additional medical criteria, 
typically relating to disability from HIV/AIDS. For example, Hawaii responded to the 
survey that a person must be infected with HIV and unable to work, or have reduced 
hours of employment, due to symptomatic HIV to meet medical eligibility requirements 
in that state for the health insurance continuation program funded by Title II. 
Income Eligibility Requirements 

The questionnaire asked the AIDS program directors to provide the maximum 
monthly income level an individual in a one-person household living in their state could 
have during 1995 to be eligible for the health insurance continuation program. In 
addition, the AIDS program directors were asked to provide the maximum monthly 
income a family of four could have during 1995 for an individual within that family to be 
eligible for the health insurance continuation program. These financial eligibility 
requirements reported by the states are presented in Table 5-3. As Table 5-3 
illustrates, these income levels are relatively generous, especially when compared to 
income eligibility standards for state Medicaid coverage (the largest payer of AIDS- 
related care.) For example, during 1993 most individuals with AIDS could not have 
incomes in excess of $434 per month to receive Medicaid coverage in most states.^* 

1CXD 



Hence, health insurance continuation programs funded by Title II can assist with the 
purchase of health insurance coverage for people infected with HIV who have incomes 
too high to become eligible for Medicaid coverage. 
Trends in Financial Eligibility Criteria 

The questionnaire asked the AIDS program directors if financial eligibility criteria 
in their state for assistance provided by the health insurance continuation program 
during 1995 have become more restrictive since 1993, providing responses of "more 
restrictive in 1995," less restrictive in 1995," or "remain the same." While financial 
eligibility requirements for the health insurance continuation program funded by Title II 
remained the same in most states, these criteria have changed in a number of states 
as Table 5-4 illustrates. The questionnaire also asked the AIDS program directors if 
they expected financial eligibility criteria for the health insurance continuation program 
in their state to become more restrictive during 1996. All the states responding to the 
survey that provided health insurance continuation programs funded by Title II 
reported that financial eligibility criteria are expected to remain the same during 1996, 
except for Virginia which expects eligibility criteria to become less restrictive in 1996. 
Spend Down Procedures 

The questionnaire asked the AIDS program directors if eligibility determination 
procedures in their state for assistance provided by the health insurance continuation 
program include a spend down provision. Spend down was defined on the 
questionnaire as "allowing the applicant to deduct the cost of medical care from 
income levels and using this medical-cost adjusted income level for eligibility 
determination." (Most state Medicaid programs allow spend down when determining 
Medicaid eligibility.^^) According to the survey responses, only the Title II programs 

101 



Table 5-4 

HeaHh Insurance Continuation Funded by Title II of the Ryan White CARE Act during 1995: 
Eligibility Criteria and Waiting Lists for Bigibility 





Compared to 1993, 
Financial Bigibility 
Criteria for Health 
Insurance Coverage 
in 1995 have Become: 


During 1996 
Rnancial Bigibility 
Criteria for Health 
Insurance Coverage is 
Expected to Become: 


Is There a Waiting 
List of People for 
Bigibility for Health 
Insurance Coverage 
During 1995? 


If There is a Waiting List for 
Bigibility for Health Insurance Coverage, 
Estimate the Following for 1995: 


Number of People 
on the Waiting List 


Length of Time 
on the Waiting List 


Alaska 


more restrictive in 1995 
CThe Title II program in A 


remain the same 
laska offered assistance \ 


no 

with private health insura 


not etpplicable 
nee coverage through 1 


not applicable 
the consortia program) 


Arkansas 


remain the same | remain the same | no | not applicsUsle | not applicable 
The Title II program in Arkansas offered assistance with private health insurance coverage through the consortia program 


California^ 


remain the same 


remain the same 


no 


not applicable 


not applicable 


Colorado 


no insurance program 
in 1993 


remain the same 


yes 


atx)ut30* 


• 


**Our waiting list is intentionally kept at a low number because there is so little tumover in the program that we feel it 
unfair to offer hope for getting on the program when there is so little chance. In Colorado 26 slots from different 
parts of the state are available to be filled. When these are full, we do not add slots. We are working with 
the state legislature to provide enough money to double the program. Until that is done, the cap will remain at 26.* 


Delaware^ 


remain the same 


remain the same 


no 


not applicable 


not applicable 


Rorida" 


less restrictive in 1995 


remain the same 


no 


not £^}plicable 


not applicable 


Georgia 


remain the same 


remain the same 


no 


not applicable 


not applicable 


Hawaii 


remain the same 


remain the same 


no 


not applicable 


not applicable 


Illinois 


remain the same 


remain the same 


no 


not applicable 


not applicable 


Kansas 


remain the same 


remain the same 


no 


not applicable 


not applicable 


Kentucky 


less restrictive in 1995 


remain the same 


no 


not applicable 


not appliceUsle 


Louisiana 


less restrictive in 1995 


remain the same 


no 


not applicable 


not appliceible 


Minnesota 


remain the same 


remain the same 


no 


not applicable 


not applicable 


Montana 


remain the same 


remain the same 


no 


not applicable 


not applicable 


New Hampshire 


The Title II program in New Hampshire plans to implement coverage of insurance payments during 1996 as a 

cost reduction strategy for drug reimbursement. 


New Jersey^ 


not applicable 


remain the same 


no 


not applicable 


not applicable 


New Mexico 


more restrictive in 1995 


remain the S£ime 


no 


not applicable 


not applicable 


South Dakota 


remain the same 


remain the same 


yes** 

**limit i 


0** 

5 5, none on the list at t 


not applicable 
lis time 


Virginia 


remain the same 


less restrictive in 1996 


no 


not applicable 


not applicable 


Wisconsin 


remain the same*** 


remain the same*** 


no*** 


not applicable*** 


not applicable*** 


***Title 11 funds are used for the cost of administering insurance programs, state funds are used to pay the premiums 


Wyoming 


remain the same 


remain the same 


no 


not applicable 


not applicable 


''States with the highest incidence of AIDS. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of state 
program administrators, Title II of the Ryan White CARE Act. This research was funded by a grant from the 
Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



102 



in Arkansas, Georgia, and Minnesota included spend down provisions in the 
determination of financial eligibility for assistance provided by health insurance 
continuation program during 1995. (Given the similarity of responses from most 
states, these data are not reported in Table 5-4.) 
Waiting Lists 

The questionnaire asked the AIDS program directors if there was a waiting list 
of people in their state waiting to receive assistance from the health insurance 
continuation program funded by Title II during 1995. If there was a waiting list, the 
AIDS program directors were asked to estimate both the number of people currently 
on the waiting list at the time of the survey and the number of days a person had to 
wait to receive health insurance continuation benefits during 1995. Based on the 
survey responses, only the Title II programs in Colorado and South Dakota reported 
the use of waiting lists for the health insurance continuation program. (See Table 5-4.) 
Colorado reported that "our waiting list is intentionally kept at a low number because 
there is so little turnover in the program that we feel it unfair to offer hope for getting 
on the program when there is so little chance. In Colorado 26 slots from different 
parts of the state are available to be filled. When these are full, we do not add slots." 
South Dakota responded that it limits the number of people waiting for assistance from 
the health insurance continuation program to five, although at the time of the survey 
no one was on the waiting list. 

Summary and Discussion 

Public programs, particularly the state Medicaid programs, pay for the health 
services provided to most people with AIDS and a significant percentage of people 
infected with HIV.^® However, the Medicaid programs establish restrictive eligibility 

103 



i 



criteria, requiring during 1993 that incomes be below $434 per month in most 
states. Programs funded by the Ryan White CARE Act provide services to people 
with AIDS and HIV infection with higher income levels, broadening and strengthening 
the public-sector safety net for financing HIV-related health care. This paper focused 
on the health insurance continuation programs funded by Title II of the CARE Act, 
presenting data on the health Insurance benefits covered, medical and financial 
eligibility criteria for assistance, and the Implementation of waiting lists for assistance. 

In all states implementing the health insurance continuation program with Title II 
funds, the programs cover health insurance premiums, with a few states also covering 
copayments, coinsurance, and/or deductibles. The study documents that the state 
Title II programs have established generous Income eligibility standards for assistance 
provided by the health insurance continuation programs, especially when compared to 
Medicaid eligibility standards. Hence, the health Insurance continuation programs 
funded by Title II can provide services to people Infected with HIV who have Incomes 
too high to become eligible for Medicaid coverage. The Title II programs strengthen 
the public-sector safety net for funding the care needed by people with HIV-related 
illness. 

However, if federal funding for Title II programs is not sufficiently increased to 
keep up with the increasing number of people expected to receive benefits from Title II 
programs, or if future federal Medicaid reform allows the states to establish even more 
restrictive Medicaid eligibility standards, then the Title II programs may not be able to 
provide services for all eligible people. This could result In the use of waiting lists, 
reduced services, some other forms of rationing, or the implementation of more 
restrictive eligibility criteria. If federal funding for Title 11 programs in the future does 

104 



not keep pace with the expected increase in the number of people eligible for Title II 
services, then the public-sector safety net for financing HIV-related care will be 
weakened. 

Acknowledgements: The author thanks the state AIDS program directors and the 
people on their staffs who took the time to answer the questionnaires that collected 
the data necessary for this research. Without their cooperation this study would not 
have been possible. 

This research was funded by the Health Care Financing Administration, U.S. 
Department of Health and Human Services (grant #18-P-90286/5-02). The views 
expressed in this paper are those of the author. No endorsement by the Health Care 
Financing Administration Is intended or should be inferred. 



105 



References 



U.S. Department of Health and Human Services, Information about the Ryan 
White Comprehensive AIDS Resources Emercency Act of 1990 (Rockville, MD: 
Bureau of Health Resources Development, August, 1993). 

McKlnney, M.M., Wieland, M.K., Bowen, G.S., Goosby, E.P., and Marconi, KM. "States' 
Responses to Title II of the Ryan White CARE Act," Public Health Reports Vol.108,No.1 (19930: 4- 
11. 

Health Care Financing Administration, U.S. Department of Health and Human Services, Improvina 
Coordination Between Medicaid and Title II of the Rvan White CARE Act (Baltimore, MD: Office of 
Legislative and Intergovernmental Affairs, April 28, 1995). 

Diaz, et al. "Health Insurance Coverage Among Persons with AIDS: Results from a Multistate 
Surveillance Project." American Joumal of Public Health . Vol. 84, No. 6 (1994): 1015-1018. 

Yelin, et al. The Impact of HIV-Related Illness on Employment." American Joumal of Public 
Health . Vol. 81. No. 1 (1991(: 79-84. 

Congressional Research Service, 1993. Medicaid Source Book: Background Data and Analysis 
(A 1993 Update) (Washington, D.C.: U.S. Govemment Printing Office, 1993). For example, under 
COBRA the individual pays the full premium, plus 2 percent to administer COBRA, for a total of 
102 percent of the premium ("Benefits Planning - What You Must Know: Interview with Daniel 
Fortuno, AIDS Benefits Counselors," AIDS Treatment News. Issue Number 255, September 20, 
1996). 

Congressional Research Service, 1993. Medicaid Source Book: Backcround Data and Analysis 
(A 1993 Update) (Washington, D.C.: U.S. Government Printing Office, 1993). For example, under 
OBRA the individual pays the full premium, plus 50 percent, for a total of 150 percent of the 
premium ("Benefits Planning - What You Must Know: Interview with Daniel Fortuno, AIDS 
Benefits Counselors." AIDS Treatment News. Issue Number 255, September 20, 1996). 

For a person with HIV illness to become eligible for Medicare requires meeting eligibility criteria 
for Social Security Disability Insurance (SSDI), including disability status, sufficient work-related 
history, and a 29-month waiting period (5 months from disability status for SSDI payment to 
begin, then 24 additional months for Medicare coverage to begin). Bally, M., Bilheimer, L, 
Wodridge, J., Langwell, K., and Greenberg, W. "Economic Consequences for Medicaid of 
Human Immunodeficiency Virus Infection." Health Care Financino Review (1990 Annual 
Supplement): 97-108. 

National Alliance of State and Territorial AIDS Directors, National Alliance of State and Territorial 
AIDS Directors - 1995 Directorv (Washington, DC: 1995). 

U.S. Department of Health and Human Services, Health Resources and Services Administration, 
Bureau of Health Resources Development, Division of HIV Services, Rvan White CARE Act Title II 
State Contacts - FY 1995 Title II Contacts (Rockville, MD: September 28, 1995). 

Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report. 1995; 7(no.2): 1-39. 
Figure 1: Male adult/adolescent AIDS annual rates per 100,000 population, for cases reported in 
1995, United States. 



106 



12. Although Alaska and Arkansas reported that Title II funds were not used In those states to 
implement a health insurance continuation program, these benefits were provided by Title II HIV 
consortia. Data on the continuation of health insurance coverage were included In the 
responses from Alaska and Arkansas to the health insurance continuation survey and these data 
are reported In Tables 3 and 4 of this paper. 

13. See note 3. 

14. Buchanan, R. "Medicaid Eligibility Policies for People with AIDS." Social Work in Health Care 
Vol.23,No.2(1996): 15-41. 

15. See note 14. 

16. Schur, C. and Berk, M. Health Insurance Coverage of Persons with HlV-Related Illness: Data 
From the ACSUS Screener. AIDS Cost and Services Utilization Survev (ACSUS) Report. No.2. 
AHCPR Pub. No. 94-0009. (Rockville, MD: Agency for Health Care Policy and Research, 1994). 

17. See note 14. 



107 



Chapter 6 

The Medicaid Home and Community-Based Care Waiver Programs: 
Providing Services to People with AIDS^ 

Introduction 

The state Medicaid programs can use the home and community-based waiver 
programs to provide a broad array of noninstitutional services to IVIedicaid recipients 
who require, or are likely to require, long term care at the intermediate nursing care 
level or higher (Miller, 1992). These waiver programs are designed to encourage 
Medicaid coverage of more appropriate home and community-based care as an 
alternative to more costly institutional care (Dobson, Moran, and Young, 1992). 
Section 2176 of the 1981 Omnibus Budget Reconciliation Act gives the Health Care 
Financing Administration the authority to waive certain federal Medicaid regulations to 
allow the states to include home and community-based services in their Medicaid 
coverage, targeted to specific Medicaid recipients such as the elderly or the physically 
disabled who would otherwise have to be institutionalized (Merzel, Crystal, 
Sambamoorthi, Karus, and Kurland, 1992; Miller, 1992). The Omnibus Budget 
Reconciliation Act of 1985 amended Section 2176 to allow AIDS-specific, Medicaid 
home and community-based waiver programs (Jacobson, Lindsey, and Pascal, 1989). 
The Technical and Miscellaneous Revenue Act of 1988 extended eligibility for these 
waiver programs to people with specific diseases (including AIDS) who were not 
receiving care at a hospital or nursing facility but who did require nursing-facility or 

^his research is published in HEALTH CARE FINANCING REVIEW, Vol. 18, No. 
4, 1997. 



108 



hospital-level care (Cowart and Mitchell, 1995). The Medicaid programs can use either 
the AIDS-specific waiver program or the original waiver program to provide special 
services to Medicaid recipients with AIDS due to their disability status (Ellwood, 
Fanning, and Dodds, 1991; Baily, et al., 1990; Buchanan, 1996). 

These home and community-based care waivers give the states flexibility not 
only in defining the populations to be covered, but also in defining the range of 
services to be covered (Lindsey, Jacobson, and Pascal, 1990). Among the services 
allowed are case management, homemaker, home health aide, personal care, adult 
day care, habilitation, day treatment, partial hospitalization services, respite care, 
psychosocial rehabilitation, private duty nursing, medical supplies and adaptive 
equipment, transportation, and home-delivered meals (Merzel, Crystal, Sambamoorthi, 
Karus, and Kurland, 1992). The waiver programs also allow more generous financial 
eligibility requirements (Buchanan, 1996). The states may establish income standards 
for the waiver programs up to 300 percent of the Supplemental Security Income 
benefit (Congressional Research Services, 1993). One half of the people with AIDS 
covered by the AIDS-specific home and community-based care waiver in New Jersey 
was entitled to coverage only due to these more generous waiver eligibility standards 
(Merzel, Crystal, Sambamoorthi, Karus, and Kurland, 1992). 

The objective of this study is to present the results of a survey demonstrating 
how the state Medicaid programs are using the home and community-based care 
waiver programs to provide health services to people with AIDS. In addition, by 
including the waiver programs for the elderly and disabled in the survey, along with the 



109 



AIDS-specific waiver program, the study illustrates the specialized services available to 
other targeted groups of people as well as to people with AIDS. 

Methodology 

To discover how the states were implementing the home and community-based 
care waiver programs during 1995, a questionnaire was mailed during June, 1995 to 
the Medicaid administrators responsible for the waiver programs in each state. Six 
additional mailings of the questionnaire were sent to the states not responding, with 
completed surveys received from 49 states and the District of Columbia by September, 
1996.'' The survey responses were summarized into tables, which were mailed back 
to the Medicaid administrators for verification, corrections, and updates in August, 
1996. The verification process was completed during November, 1996. These verified 
and updated tables are presented in this research as Tables 6-1 through 6-6. 

The questionnaire was divided into three sections: Medicaid Home and 
Community-Based Care Waiver for the Elderly and Disabled; a separate Medicaid 
Home and Community-Based Care Waiver for the Disabled; and a separate AIDS- 
specific Medicaid Home and Community-Based Care Waiver. To facilitate the 
completion of the questionnaire, each of the three sections included the following list 
of services, with a request to circle any service covered by that particular waiver 
program during 1995:*^ 

^ The Massachusetts Medicaid program did not complete the survey process. 
° Note that each list of services included "Other (please describe)." 

110 



skilled and private duty nursing 

home aerosolized drug therapy 

in-home respite care 

day treatment/partial hospitalization 

in-home diagnostic testing 

home intravenous therapy 

home mobility aids/devices 

substance abuse services 

rehabilitation services 

home-delivered meals 

HIV support groups 

HIV prevention education for families 

other (please describe): 



homemaker services 
adult medical day care 
inpatient respite care 
durable medical equipment 
emergency home response 
transportation services 
home/environmental modifications 
mental health counseling 
podiatry services 
congregate meals services 
child care services 
adult social day care 



personal care services 
live-in attendant 
medical social services 
hospice care 
case managers 
benefits advocacy 
handyman services 
nutritional counseling 
dental care 
housing referrals 
legal services 
moving assistance 



Each of the three sections of the questionnaire asked the Medicaid 
administrators to list any services covered by that particular Medicaid Home and 
Community-Based Care waiver program during 1995 that was "most effective at 
meeting the health care needs of people with HIV-related illness." Each of the three 
sections also asked the Medicaid administrators to "estimate the number of Medicaid 
recipients with HIV-related conditions who received services" from that particular 
waiver program during 1994. In addition, the section of the questionnaire focusing on 
the AIDS-specific Home and Community-Based Care Waiver asked the Medicaid 
administrators to "estimate the number of Medicaid recipients with HIV-related 
conditions 18 years of age and younger who received services" from that waiver 
program during 1994. The questionnaire concluded by requesting a copy of the most 
recent HCFA 372 Report available for the AIDS-specific waiver.'^ 

^ The HCFA Form 372 is the Annual Report on Home and Community-Based 
Services Waivers, which includes reports on expenditures and other program 
data (Lindsey, Jacobson, and Pascal, 1990). The HCFA 372 data returned by 
most states were incomplete, with many states not returning any HCFA 372 



111 



The AIDS-Specific Waiver 

As Table 6-1 documents, 15 states implemented an AIDS-specific Medicaid 
Home and Community-Based Care Waiver Program during 1995, including North 
Carolina which began its waiver program on November 1, 1995. In addition to these 
15 states, an AIDS/HIV-specific waiver program was approved for the District of 
Columbia in December, 1996 and Maine expects to implement an AIDS-specific waiver 
program during 1997. Although not a separate, AIDS-specific waiver, Maryland 
implements a "targeted case management program" through its regular Medicaid state 
plan for people who are infected with HIV (see Table 6-1). In addition to the services 
provided on the questionnaire, Table 6-1 presents other HIV-related services covered 
by a number of states with their AIDS-specific waiver programs. Examples of these 
other services are: physical therapy, massage services, companion services, stipends 
to foster families caring for children who are infected with HIV, and nutritional 
supplements. 

Table 6-2 lists the services provided by the AIDS-specific waiver programs that 
the state Medicaid administrators identified as most beneficial at meeting the care 
needs of people with AIDS. Among the services mentioned are: personal care, 
nursing care, case management, home-delivered meals, respite care, counseling, 
homemaker services, home intravenous therapy, hospice care, nutritional counseling 



data. Due to the possible bias of the$e data, given the large number of 
states not reporting data, these HGFA 372 data are not Included In this paper. 
Tables summarizing the limited HGFA 372 data that were reported In the 
survey are presented In Appendix 2. 

112 



Table 6-1 

The AIDS-Specific, Medicaid Home and Community-Based Care Waiver Program: 
Services Covered During 1995 





The Home and Community-Based Care Services Covered During 1995: 


California 


skilled nursing,, homemaker services, home-delivered meals, nutritional/dietary supplements, specialized medical 
ec]uipment and supplies, non-emergency medical transportation services, home/environmental modifications, 
psychosocial counseling, attendant care, case managers, nutritional counseling, 
and Medi-Cal supplement for infants and children in foster care 


Colorado 


skilled and private duty nursing, homemaker services, adult day care, emergency home response, transportation services, 

and personal care services 


Delaware 


in-home respite care, homemaker services, adult medic£U day care, inpatient respite care, mental health counseling, 
personal care services, case managers , and nutritional supplement (new service to be added in 1995). 


District of 
Columbia 


An AIDS/HIV-specific waiver was approved in December, 1996 


Rorida 


skilled & private duty nursing, home aerosolized drug therapy, in-home respite care, day treatment/partial hospitalization, 
home intravenous therapy, home mobility aids/devices, substance abuse sen/ices, rehabilitation services, home- 
delivered meals, HIV prevention education for families, homemaker services, adult medical day care, inpatierrt respite 
care, emergency home response, home/environmental modifications, mental health counseling, personal care services, 
case managers, handyman services, physical therapy, massage services, companion services, 
and moving assistance (labor) (not as a separate service) 


Hawaii 


skilled nursing, respite care, medical day health care, emergency alarm response, non-medical transportation services, 
counseling and training (includes nutritional and substance abuse counseling), person£ii care sen/ices, case managers, 
moving assistance, home-delivered meals, and supplemental stipend 
to foster families caring for children who are HIV infected 


Illinois 


homemaker services, adult medical day care, emergency home response, home/environmental modifications, 

r>ersonal care services 


Iowa 


skilled and private duty nursing, in-home respite care, home-delivered meals, home health aide, 
homemed<er services, mental health counseling, and personal care 


Maine 


Maine expects to implement an AlDS-specific waiver during 1997 


Maryland 


The Medicaid program in Maryland 'does not have a specific waiver for people with AIDS, however, a targeted case 
mamagement program is available under the state plan for people who are HIV positive. [Medicaid] recipients 
who are diagnosed as HIV positive or are less than two years old and bom to a womsin diagnosed as HIV 
infected are eligible to receive services. A muttidisciplinary team assesses the individual and develops a 
written plan of care that addresses all the recipient's medical, psychological, social, functional, and other needs. 
The recipient can then elect to receive ongoing case management services to implement the plan of care. 
The case manager .. [makes] referrals to and arrangements with service providers selected by the recipient and [advises] 
the recipient about all available services. ... The HIV Targeted Case Management Program is a totally voluntary, 
client-driven program. The recipient participates fully in the development and implementation of the plan of care." 


Missouri 


skilled and private duty nursing, transportation services, personal care sendees, 
diapers, chucks, gloves, and case managers 


New Jersey 


skilled and private duty nursing, home aerosolized drug therapy, day treatment/partial hospitalization, 
in-home diagnostic testing, home intravenous therapy, home mobility aids/devices, substzince abuse sen/ices, 
rehabilitation services, adult medical day care, durable medical equipment, transportation services, 
mental health counseling, podiatry services, personal care services, medical social services, 
hospice care, case managers, nutritional counseling, and dental care 


New Mexico 


skilled and private duty nursing, homemaker services, personal care services, and case managers 
(*We would like to add home health aide and adult day health services.') 


North Carolina 


The AIDS-spedfic waiver vtnll be implemented on 11/1 /95 and cover: in-home respite care, home mobility aids/devices, 
home-delivered meals, homemaker services, adult medical day care, inpatient respite care, emergency home response, 
home/environmental modifications, Personal care and case managers 


Pennsylvania 


skilled nursing, in-home respite care (homemaker services), homemaker services, durable medical equipment, child care 
services (homemaker services), personal care services (homemaker services), and nutritional counseling 
(case management is a state plan service covered as targeted case management) 


South Carolina 


skilled and private duty nursing, home-delivered meals, HIV support groups/individual counseling, home/environmental 
modifications, personetl care sendees, hospice care, case managers, and foster care 


Virginia 


case management, personal care, skilled nursing services, respite care, and nutritional supplements 


Washington 


hourly skilled nursing, attendant care, respite care, therapeutic home-delivered meals, psychosocial sen/ices, 
transportation, nutrition consultation, intermittent nursing services, and adult day health care 


All other states i 
program during 


except Massachusetts) responded that they did not have an AlDS-specific Home and Community-Based Care Waiver 
1995. The Massachusetts Medicaid program did not complete the questionnaire. 



113 



Table 6-2 

The Medicaid Home and Community-Based Care Waiver Program for People with AIDS: 
Beneficiaries with HIV-Related Conditions and Effective Services for People with HIV-Related Conditions 







Number of Medicaid Recipients with 
HIV Illness Receiving Services from 
Waiver Program for People with AIDS 




Effective Home & Community-Based Care Waiver Services 
for People with HIV-Related Illness 


Califomia 


all AIDS/HIV waiver services are necessary and helpful 


adults: 2,500 people (1994) 
children 18 years and younger: 300 (1994) 


Colorado 


personal care 


adults: 125 people (1995) 
children 18 years and younger: 3 (1995) 


Delaware 


'All services [covered in the AIDS waiver] ... in addition to 
regulfir Medicaid covered services.* 


adults: 86 people (1994) 
children 18 years and younger: (1994) 


District of 
uoiumuia 


An AiDS/HIV-specific waiver was approved in Decemt>er, 1996 


Not applicable 


rioriua 


'All AIDS waiver services aie medically necessary." 


adults: 6,000 -t- people (1994) 
children 18 yrs. & younger: data not available 


Hawaii 


personal care services, case management services, 
home-delivered meals, and counseling and training services 


adults: 104 people (1994) 
children 18 years and younger: (1994) 


Illinois 


all waiver-covered services are beneficial to people with AIDS 


adults: 1,368 people (1994) 
adults: 2,292 people (1995) 
children 18 yrs. & younger: data not available 


Iowa 


Skilled and private duty nursing, in-home respite care, In-patient 
respite care, counseling, home health aide services, homemaker 
services, and home-delivered meals 


adults: 19 people (1994) 
children 18 years and younger: (1994) 


Maine 


Maine expects to implement an AiDS-specific waiver during 1997 


Maryland 


Maryland does not have an AIDS-specific, Medicaid Home and Community-Based Waiver, but implements the 
program 'HIVTargeted Case Management Services'. (See Table 1) This program served 760 people during 1994. 


Missouri 


skilled and private duty nursing 


adults: 200 people (1994) 
children 18 years and younger: 10 (1994) 


New Jersey 


case management, private-duty nursing, home I.V. therapy, 
personal care services, and hospice care 


adults: 1,428 people (1994) 
children 18 years and younger: * 


•"We have served 318 children under 20 fyears of age] from 3/87 to 12/94. No stats, on the number served in 1994." 


New Mexico 


private duty nursing and homemaker/personal care services. 
"We would like to add home health aide and adult day health services. 


adults: 70 people (1995) 
children 18 years and younger: 1 (1995) 


North Carolina 


North Carolina implemented an AIDS-specific, Medicaid Home and 


Community-Based Waiver effective 1 1 /I /95 


Pennsylvania 


homemaker services, nutritional consultations, £ind 
nutritional supplements 


adults: 173 people (1993/1994) 
children 18 years and younger: * 


*Not applicable because "services are provided under the Early Periodic Screening and Diagnosis Program." 


South Carolina 


private duty nursing, personal care aide services, and counseling 


adults: 594 people (1994) 
children 18 years and younger: 6 (1994) 


Virginia 


data not available 


data not available 


Washington 


"The waiver services most effective are home health aides and 
personal care attendants assisting with 4 to 8 hours per day or to 
supplement care in residential settings. Waiver services are in 
addition to the usual state Medicaid home health services." 


adults: 54 people (1995) 
children 18 years and younger: 1 child (1995) 


All other states (except Massachusetts) responded that they did not have an AIDS-specific Home and 

Community-Based Care Waiver program during 1995. The Massachusetts Medicaid program did not complete the questionnaire. 



1 

llA 



and supplements, and personal care attendants. Table 6-2 also presents the number 
of adults and children that received services from the AIDS-specific Home and 
Community-Based Care Waiver Programs during 1994. 

The Elderly and Disabled Waiver 

As Table 6-3 illustrates, each Medicaid program, except the District of 
Columbia, provided services to eligible groups with the Medicaid Home and 
Community-Based Care Waiver Program for the Elderly and Disabled during 1995. 
(The Massachusetts Medicaid program did not complete the survey process.) In 
addition to the services listed on the questionnaire, a number of states also covered 
other home and community-based services. Examples of these other services are: 
chore services; habilitation services; alternative care facilities; elderly foster care; 
laundry services; assisted-living services; respiratory therapy; psychological 
consultation for family members and other caregivers; speech, physical, and 
occupational therapies; training of family caregivers; and specialized living facilities. 

Case management has been identified as one of the most important waiver 
services needed by people with AIDS (Merzel, Crystal, Sambamoorthi, Karus, and 
Kurland, 1992). When the Medicaid administrators were asked in the survey to identify 
services covered by the waiver program for the elderly and disabled in their state that 
were most effective at meeting the care needs of people with AIDS, case management 
services were consistently mentioned, as Table 6-4 documents. Other services that 
were listed in the survey responses as most effective at meeting HIV-related care 
needs are: personal care, homemaker services, in-home and inpatient respite care. 



115 



Tabte6-3 

The Medicaid Home and Community-Based Care Waiver Program for the Elderly and Disabled: 

Services Covered During 1995 





The Home and Community-Based Care Services Covered During 1995: 


Alabama 


in-home respite care (skilled and unskilled), homemaker sennces, adult social day care, 
personal care services, and case managers 


Alaska 


skilled and private duty nursing, in-home respite care, home-delivered meals, chore servk:es, emergency home response, 
transportatk>n servKes, home/environmental modificatkxis, congregate meal services, adult social day care, case 
managers, and specialized medical equipment and supplies. In addition to ttiese servKes, 
hat>ilitation and intensive active therapies are available for the disabled. 


Arizona 


skilled and private duty nursing, irvhome respite care, honne intravervjus therapy, 
home nK)t>ility akte/devk^, substance abuse sennces, rehabilitation sennces, home-delivered meals, homemaker 
services, adult day care, inpatient respite care, durable medical equipment, emei^ency home response, 
transportation servk:es, home/environmental nradlfications, mental health counseling, personal 
care servk:es, live-in attendant, hospice care, case managers, handyman services, and nutritional counseling 


Arkansas 


in-home respite care, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, 
emergency home response, adult social day care, and chore services (e.g.., errands, household tasks, yard maintenance) 


California 


The California Medkxud program provides home and community-based care waiver servKes to people 
with AIDS through the AIDS-specific waiver 


Cokirado 


homemaker servKes, adult day care, emergency home response, transportation 8ervk:es, 
home/environmental modifications, personal care services, and alternative care facilities 


Connecticut 


skilled and private duty nursing, in-home respite care, rehat>illtation sennces, home-delivered meais, 
homemaker serwces, adult medial day care, inpatient respite care, emenjency home response, 
transportation services, mental health counseling, adult social day care, case managers Oncluding t>enefits advocacy), 
chore sennces, elderly foster care, home health aide, and laundry services 


Delaware 


in-home respite care, homennaker services, adult medical day care, inpatient respite care, emergency home response, 
adult social day care, personal care services, and case managers 


District of 
Columbia 


no Medk^akl Home & Community-Based Care Waiver for the Ekterty and Disabled during 1995. 


Fk>rida 


in-home respite care, home mobility akte/devices, home-delivered meals, homemaker services, adult medical day care, 
emergerKy home response, mental health counseling, adult social day care, personal care servKes, case managers, 
benefits advocacy, handyman services, and nutritional counseling 


Georgia 


skilled and private duty nursing, in-home respite care, rehabilitation sennces, home-delivered meals, 
homemaker services, inpatient respite care, emergency home response, personal care servKes, 
medk:al social ser^ces, case managers, and attemative living services 


Haweui 


skilled nursing, respite care, home-delivered meals (including congregate meals), homemaker services, emergency 
alarm response, non-medk:al transportation services, personal care servrces, nutritional counseling, moving assistance, 
honne maintenance, environmental modifications, adult day health care, and case managers 


Idaho 


personal care servnes and case managers ("Medicaki clients under age 21 may be eligible for other 
servkies through Early and Periodic Screening, Diagnosis, and Treatment.") 


Illinois 


homemaker services, adult medical day care, emergency home response, home/environmental modifications, 

personal care services, and case managers 


Indiana 


irv4iome respite care, home mobility akte/devrces, home-delivered meals, homennaker services, 
inpatient respite care, emergency home response, home/environmental modifications, adult day care, 
attendant care services, and case managers 


Iowa 


skilled and private duty nursing, in-home respite care, honne mobility aids/devices, home-delivered meals, homemaker 
servKes, inpatient respite care, emergency home response, b^nsportation servrces, home/environmental modifications, 
mental health outreach, adult social day care, personal care services, handyman/chore services, and home health akl 


Kansas 


in-home respite care, homemaker services, adult medrcal day care, inpatient respite care, emergerK:y home response, 
transportation servk^, adult social day care, personal care services, and case managers 


Kentucky 


in-home respite care, homemaker servKes, adult medical day care, home/environmental modifications, 
personal care services, and case managers 


Louisiana 


emergency home response, home/environmental modifications, personal care servKes, and case managers 


Maine 


For Vhe Ekleriy: skilled and private duty nursing, rehabilitation services, homemaker services, adult medical day care, 
emergency home response, transportation services, mental health counseling, personal care services, 
liveHn attendant, medical social services, and case managers 


Maryland 


Senior Assisted Housing Waiver, home/environmental modifications, adult social day care, t)ehavior consultation, 
environmental assessments, assistive equipment and case managers (not a waiver servne, but provkted as part of 
the duties of administering the waiver); also homemaker servk^es, personal care servKes, preparation and 
serving of meals, and medk:ati'on assistance are provided as part of the assisted living services package. 


Massachusetts 


The data from Massachusetts is in the verification process 


Michigan 


private duty rujrsing, in-home respite care, day treatment, home-delivered meals, honnemaker sennces, 
inpatient respite care (foster care), durable medkal equipment, emergency home response, 
transportation servKes, home/environmental modifk^ations, adult social day care, personal care superviskxi, 
case managers, chore services, training, medical supplies, and counseling (not just mental health) 


Minnesota 


skilled and private duty nursing, in-home respite care, home-delivered meals, homemaker servnes, inpatient respite care, 
emergency home response, transportation services, home/environmental modifKations, adult social day care, 
personal care servrces, case managers, and specialized foster home 


Mississippi 


honne-delivered meals, homemaker servrees, adult medkai day care, inpatient respite care, case managers, 
and extended home health care coverage (i.e., in addition to the allowed visits under the state plan) 


Missouri 


in-home respite care, homemaker servk»s, case managers, and handynrian servnes 
(these services are available only to recipients wt>o are 65 years or oWer) 



116 



Table 6-3 

The Medicaid Home and Community-Based Care Waiver Program for the Elderly and Disabled: 

Services Covered During 1995 





The Home and Community-Based Care Services Covered During 1995: 


Montana 


skilled and private duty nursing,* in-home respite care, home mobility aids/devices,* home-delivered meals, 
homemaker services, inpatient respite care, emergency home response, transportatk>n services (social only), 
home/environmental modifKations, congregate meal services, adult social day care, personal care services,* 
case managers, nutritkxial counseling, moving assistarKe, habilitation services, respiratory therapy, 
and psychok>gical consultation (for family members or other caregivers) 




'covered under both the state plan and the waiver program, but the waiver servne is defined differently. "For e.g., state 
plan personal care does not allow for supervision and homemaker tasks, ... [but] are alknved under the HCBS waiver." 


Nebraska 


in-home respite care, homemaker servk^, aduK medial day care, out-of-home respite care, 
transportation services, and handyman services 


Nevada 


in-home respite care, home-delivered meals, homemaker services, adult social day care, personal 
care services (covered in state plan too), medical social services, and case managers 
(the state plan covers many additional home and communtity-t>ased care sennces) 


New Hampshire 


skilled nursing, home aerosolized drug therapy, in-home diagnostk: testing, honne intravenous therapy, honne mobility 
akis/devices, rehat>ilitation services, home-delivered meals, homemaker services, adult medial day care, inpertient 
respite care, durat>le medial equipment, emergerKy home response, transportatkm services, home/environmental 
modificatkMis, mental health counseling, podiatry services, congregate meal sendees, and case managers 


New Jersey 


skilled nursing, in-home respite care, homemaker services, adult medical day care, inpatient respite care, transportation 
services, adult social day care, medical social services, hospice care, case managers, and nutritional counseling 


New Mexico 


skilled and private duty nursing, in-home respite care, homemaker servKes, personal care sendees, and case managers; 
Effective 7/1/95 "we intend to anfiend the Disabled/Eklerty waiver to include adult day health care, assisted living, 
personal services, environmental modifications, emergency response, and P.T., O.T., and speech therapy 


New York 


in-home respite care, home-delivered nrieals, inpatient respite care, emergerKy home response, transportation 
services (for social day care), adult social day care, home/environmental modificatkxis, medial social services, 
case managers (part of package of services), nutritional counseling, and moving assistance 


North Carolina 


in-home respite care, home nfK>t>ility aids/devnes, home-delivered meals, 
homemaker servkses, adult medk^al day care, inpatient respite care, emergency home response, 
home/environmental modificatrons, personal care sennces, and case managers 


North Dakota 


institutunal and in-home respite care, homemaker servk^, adult social day care, personal care servnes, chore services, 
case managers, specialized equipment, environmental nradifkatk>n, rKMvmedical transportatk>n, 
training of family caregivers, and home health aide 




North Dakota has a Sennce Payments for the Eklerty and Disabled (SPED) Program and an Expanded SPED Program whk^h 
are funded t>y state and county revenues. Several people with AIDS receive in-home services from these programs. 


Ohk) 


in-home respite care, home-delivered meats, homemaker services, home/environmental modifications, 
personal care services, and case managers 


Oklahoma 


skilled and private duty nursing, in-home respite care, home-delivered meals, homemaker servk:es, 
inpatient respite care, durable medial equipment, home/environmental modificatk>ns, 
adult social day care, personal care services, and case managers 


Oregon 


home care services, live-in attertdant Cincluding irvhome respite care), home/environmental modificatkxis, home-delivered 
meals, reskiential care facilities, assisted-living facilities, adult foster homes, and specialized living facilities 


Pennsylvania 


skilled nursing, in-home respite care, home mobility akte/devk«s, rehabilitatkxi servKes, home-delivered meals, 
homemaker servrees, adult medk:al day care, inpatient respite care, durable medical equipment, emergency 

home response, transportatkm servk^, home/environmental modifk::atk>ns, mental health counseling, 
adult social day care, personal care services, case managers, handyman services, and nutritional counseling 


Rhode Island 


homemaker servk»s, emergency home response, personal care servnes, and home/environmental nrodificatkKis 


South Carolina 


home-delivered meals, adult medical day care, inpatient respite care, home/environmental modifications, 
personal care services, medical social services, and case managers 


South Dakota 


skilled and private duty nursing, homemaker servKes, and adult social day care 


Tennessee 


home-delivered meals, homemaker services, home/environmental modificatk>ns, 
personal care services, and case managers 


Texas 


skilled and privcrte duty nursing, in-home respite care, home mot>ility akls/devices, rehabilitation services, durat>le 
medical equipment, emergency home response, home/environmental modifications, and personal care services 


Utah 


in-home respite care, home-delivered meals, homemaker services, inpatient respite care, emergency home response, 
transportatkm services, adult social day care, and case managers 


Vermont 


in-home respite care, inpatient respite care, adult social day care, personal care servk:es, and case managers 


Virginia 


The Virginia Medicaid program provides home and community-based care waiver services to people 
with AIDS through the AIDS-specific waiver 


Washington 


skilled nursing, home-delivered meals, emergency home response, transportation sennces, home health akte, night support, 
client training, assisted living, home/environmental modifications, adult social day care, and personal care services 


West Virginia 


homemaker servk^, transportation services, personal care servk^es, case managers, and chore servk:es 


Wisconsin 


in-home respite care, home mot>ility akte/devKes, rehabilitatkm servKes, home-delivered meals, homemaker servKes, 
adult medkal day care, inpatient respite care, durable medkal equipment, emergerKy home response, transportatkxi 
servKes, home/environmental modificatk>ns, mental health counseling, adult day care, personal care servKes, 
live-in attendant, case managers, benefits advocacy, chore servKes, and nutritional counseling 


Wyoming 


personal care, respite care, adult day care, home-delivered meals, PERS, and norv-medKal transportatkm 



117 



attendant care, hospice care, home-delivered meals, and unlimited prescription 
drugs.® (See Table 6-4.) As Table 6-4 also illustrates, the Medicaid Home and 
Community-Based Care Waiver Programs for the Elderly and Disabled provided 
services to Medicaid recipients with HIV-related conditions in a number of states. 

The Disabled Waiver 
Most states did not have a separate Medicaid Home and Community-Based 
Care Waiver Program for the Disabled, as Table 6-5 demonstrates, but often combined 
this coverage with the waiver program for the elderly. Table 6-5 presents the services 
covered by the states implementing a separate waiver program for the disabled. 
However, many of these separate waiver programs for the disabled are targeted at 
specific groups of people with disabilities and are not available to most people with 
AIDS. For example, the Medicaid Home and Community-Based Care Waiver Program 
for the disabled in Connecticut is targeted to people with mental retardation. 
According to the survey response, Connecticut is developing a new waiver for people 
with physical disabilities and another new waiver for people with an acquired brain 
injury. The separate waiver program for the disabled in Hawaii is targeted to the 
developmentally disabled and other Hawaiians with disabilities are served through the 
waiver programs for the elderly and disabled. (Hawaii also implements the AIDS- 
specific waiver.) Similarly, the waiver program for the disabled in Louisiana is targeted 
to the developmentally disabled. New Jersey has several waiver programs for the 

® The state Medicaid programs may impose utilization limits on the 
prescription drugs covered by the regular state Medicaid plan (Buchanan 
and Smith, 1994). 

118 



Table 6-4 

The Medicaid Home and Community-Based Care Waiver Program for the Bderly and Disabled: 
Beneficiaries with HIV-Related Conditions and Effective Services for People with HiV-Related Conditions 







Number of Medicaid Recipients with 




Effective Home & Community-Based Care Waiver Services 
for People with HIV-Related Illness 


HIV Illness Receiving Services from 
Waiver Program for Bderiy and Disabled 


Alabama 


personal care, homemaker services, case manager, 
and respite care 


diagnosis-specific data not available 


Alaska 


'No AIDS-specific waiver. IHowever, services available through our 
present waivers can meet the needs of HIV-related individuals." 


1 person 


Arizona 


respite care, hospice care, case manager, attendant/personal 
care, and home health services (nursing and aide) 


data not available 


Arkansas 


'Any of these [waiver] services could be used by AIDS recipients, 
if they meet the criteria.' 


data not available 


Califomia 


Califomia has an AIDS-specific Home & Community-Based 
Services waiver 


2,500 adults and 300 children (18 years or 
younger) received services during 1994 
from the AIDS-specific waiver 


Colorado 


"We have our own HCBS waiver for AJDS/HIV - but they may still 
access the elderiy waiver if they want.' 


data not available 


Connecticut 


ail waiver services are available if the person is 
determined eligible for the waiver program 


data not available 


Delaware 


'All [waiver-covered services in Delaware] in addition to 
regular Medicaid-covered services.' 


data not available 


District of 
Columbia 


no Medicaid Home & Community-Based Care Waiver 
for the Bderly and Disabled during 1995 


not applicable 


Rorida 


Rorida has an AIDS-specific htome & Community-Based 
Services waiver 


data not available 


Georgia 


'AIDS clients may use the program if they meet the 
eligibility criteria.' 


data not available 


Hawaii 


hHawaii has an HIV/ AIDS-specific Home & Community-Based 
Services waiver 


104 people with HIV/ AIDS received 
services during 1995-1996 in the 
HIV/AIDS waiver program 


kjaho 


'HCBS waiver services are very limited [in kleiho]." 


"We estimate that a small number of 
HCBS clients have HIV-related conditions." 


Illinois 


all the services covered by the waiver program are effective 
at meeting the care needs of people with HIV-related illness 


data not avsiilable 


Indiana 


case management, homemaker services, and attendant care 


13 people with HIV-related illness 
during FY 1996 


towa 


Skilled and private duty nursing, in-home respite care, in-patient 
respite care, counseling, home health aide services, homemaker 
services, and home-delivered meals 


19 people with HIV-related illness 
during 1994 


Kansas 


personal care services 


data not available 


Kentucky 


The services provided through the waiver program are available 
to all eligible people; HIV-specific data is not collected 


HIV-specific data is not collected 


Louisiana 


not available 


data not available 


Maine 


The waivers for the elderly and disabled are not targeted' to 
the HIV-related illness ' 


The Bderiy waiver provided services to 
no one with HIV-related illness durino 1995 


Maryland 


data not available if Senior Assisted Housing Waiver has 
provided services to people with HIV-related illness. 


not applicable 


Massachusetts 


The data from Massachusetts is in the verification process 




Michigam 


'Use all services sis any other waiver client. No one or two 
specific services stand out." 


"Due to confidentiality issues in the State, 
we dont keep this specific data." 


Minnesota 


specialized foster home/hospice 


20 people with HIV-related illness 


Mississippi 


"Care plans are individualized with the appropriate waiver-covered 
services provided." 


data not available 


Missouri 


Missouri has an AIDS-specific Home & Community-Based 
Services waiver 


200 people received services from the 
AIDS-specific waiver program 



119 



Table 6-4 

The Medicaid Home and Community-Based Care Waiver Program for the Bderly and Disabled: 
Beneficiaries with HIV-Related Conditions and Effective Services for People with HIV-Related Conditions 







Number of Medicaid Recipients with 




Effective Home & Community-Based Care Waiver Services 
for People with HIV-Related illness 


HIV Illness Receiving Services from 
Waiver Program for Bderly and Disabled 


Montana 


personal care, private duty nursing, home-delivered meals, 
and respite care* 


2 people with HIV-related illness 
during 1994 




*"We have excellent benefits under our state plan so many individuals with AIDS do not need to be enrolled in the 
waiver program to receive the services they need. We are adding ... special child care for children with AIDS, 
to allow us to provide in-home day care to the one child currently enrolled.* 


Nebraska 


'Needs not tracked by type of disability.' 


5 people with HIV-related illness 


Nevada 


homemaker services, personal care sendees, and case 
management (which includes medical social services) 


people with HIV-related illness 
during 1994 or 1995 


New Hampshire 


none mentioned 


20-25 people with HiV-related illness 


New Jersey 


New Jersey has an AIDS-specific Home & Community-Based 
Services waiver 


not applicable 


New Mexico 


"The Disabled/Bderly [weiiver program] is not serving anyone 
with HIV-related illness fduring 1995].' 


people with HIV-related illness 
during 1995 


New York 


no sen/ices mentioned 


874 people with HIV-related illness during 
calendar year 1994 


North Carolina 


'People with HIV-related illness may be served under our 
Home and Community-based waiver program.' 


data not avsulable 


North Dakota 


'Most services are delivered to those persons eligible for nursing 
facility level of care. All [waiver services covered in North [Dakota] 
would be effective if those eligible have an HIV-related illness.' 


"We do not separate this data, if a person 
is nursing facility eligible, we do not look at 
their diagnosis." 


North Dakota has a Service Payments for the Qderly and Disabled (SPED) Program and an Expanded SPED Program w 
are funded by state and county revenues. Several people with AIDS receive in-home services from these programs. 


Ohio 


home-delivered meaJs, homemsiker services, and personal care 


'Exact number not known - less than 
150 people [with HIV-related illness].' 


Oklahoma 


not applicable 


people with HIV-related illness 


Oregon 


HIV-related clients are not identified as a separate service category. HIV clients (even if known) are assimilated 
into all care settings. In most cases HIV-dlagnosed clients are not known, unless self identified.' 


Pennsylvania 


Pennsylvania has an AIDS-specific Home & Community-Based 
Services waiver 


about 200 people are served each year 
under the AIDS-specific waiver 


Rhode Island 


Serostim drug therapy - a growth hormone for persons 
with AIDS-wasting syndrome 


30 people with HIV-related illness a year 


South Carolina 


South Carolina has an AIDS-specific Home & Community-Based 
Sen/ices waiver 


not applicable (0 people with HIV-related 
illness in the year ending 9/30/94) 


South Dakota 


not applicable at this time 


people with HIV-related illness 


Tennessee 


personal care services, homemaker services, home-delivered 
meals, case management, and home/environmental modifications 


1 person with HIV-related illness 
during 1994 


Texas 


Medicaid health insurance, unlimited prescription drugs, skilled 
nursing services, and personal care services 


data not available 


Utah 


not applicable 


people with HIV-related illness 


Vermont 


unknown 


unknown 


Virginia 


The Virginia Medicaid program provides home and community-based care waiver services to people 
with AIDS through the AIDS-specific waiver 


Washington 


all waiver services are effective 


This data is not collected.' 


West Virginia 


insufficent data to respond 


4 people with HIV-related illness 
during 1996 


Wisconsin 


personal care, live-in attendant, homemaker sen/ices, 
adaptive aids, home-delivered meals, and respite care 


°We do not collect this data.' 


Wyoming 


"[People with] HIV are not treated as a group, only as part of the 
HCBS population meeting established eligibility guidelines." 


'Unknown unless specifically identified.' 



120 



Tables^ 

The Medicaid IHome and Community-Based Care Waiver Program for the Disabled: 
Services Covered During 1995 





The Home and Community-Based Care Services Covered During 1995: 


Alabama 


in-home respite care, assistive technology, emergency home response, home/environmental modifications, 
personal care services, case managers, and medical supplies fup to $150 per month for items not covered by the 
regular Medicaid state plan under durable medical equipment*) 


Alaska 


skilled and private duty nursing, in-home respite care, home-delivered meals, chore services, emergency 
home response, tremsportation services, home/environmental modifications, congregate meal services, adult social 
day care, case managers, habilitation, intensive active therapy, and specialized medical equipment and supplies 


Arkansas 


home/environmental modifications, aduH social day care, medical social services, case managers, employment 
services, crisis abatement (temporary placement in a facility when 'recipient cannot be dealt with or is not safe 
in current environment'), and habilitation (teach skills to manage in the world, ADL, money management*) 


California 


California has an AiDS-specific Home & Community-Based Services waiver 


Connecticut 


'Connecticut has a separate Medicaid Home and Communrty-Based Waiver for people with mental retardation 

and is developing two new waivers. The first will cover personal assistance services to people with 
physical disabilities. The second will provide a wide range of services to people with an acquired brain injury." 


Rorida 


in-home respite care, home mobility aids/devices, home-delivered meals, homemaker services, adult medical day care, 
emergency home response, mental health counseling, adult sodai day care, personal care services, case managers, 
benefits advocacy, handymcin services, and nutritional counseling 


Georgia 


For severely disabled: skilled and private duty nursing, home mobility aids/devices, homemaker services, 
durable medical equipment, emergency home response, transportation services, home/environmental 
modifications, mental health counseling, personal care services, and case managers 


Hawaii 


Hawaii has a separate Medicaid Home and Community-Based Waiver for the Developmentally Disabled. Other 
persons with disabilities are served through combined programs for the elderly/disabled: 
(1) Nursing Homes Without Walls or (2) Residential Alternatives Community Care Program 


Illinois 


homemaker services, adult medical day care, emergency home response, home/environmental modifications, 

personal care services, and case managers 


k>wa 


in-home respite care, homemaker services, inpatient respite care, adult social day care, personal care services, 

skilled nursing, and home health aide services 


Louisiana 


For the developmentally disabled: in-home respite care, home mobility aids/devices, inpatient respite care, 

emergency home response, home/environmental modifications, personal care services, case managers, 
and habilitation services (including residential, pre-vocational, supported employment, and day habilitation) 


Maine 


personal care services and case managers 


Michigan 


Michigan does not have a separate Medicaid Home and Community-Based Wsuver for the Disabled 


Minnesota 


skilled and private duty nursing, in-home respite care, home-delivered meals, homemaker services, inpatient respite care, 
emergency home response, transportation services, home/environmental modifications, adult social daycare, 
personal care services, case managers, and specialized foster home 


Mississippi 


personal care services and case managers 
TRacipients must be severely orthopedically or neurologically impaired, with some rehabilitation potential.') 


Nevada 


homemaker services, medical social services, and case managers 
(the state plan covers many additional home and community-based care services) 


New Jersey 


skilled and private duty nursing, home aerosolized drug therapy, in-home respite care, day treatment/partial 
hospitalization, in-home diagnostic testing, home intravenous therapy, home mobility aids/devices, substance abuse 
services, rehabilitation services, adult medical day care, inpatient respite care, durable medical equipment, 
tramsportation services, home/environmental modifications, mental health counseling, podiatry services, personal 
care services, medical social services, hospice care, case mangers, nutritional counseling, and dental care* 


*New Jersey has several waivers for the disabled and the services vary according to the specific waiver; 
these services are provided in at least one of these waivers. 


Pennsylvania 


skilled nursing, in-home respite care, home mobility aids/devices, rehabilitation services, durable medical equipment, 
emergency home response, transportation services, home/environmental modifications, personal care services, 
livenn attendamt, case managers, benefits advocacy, handyman services, and housing referrals 


South Dakota 


in-home respite care, home mobility aids/devices, inpatient respite care, transportation services, 
case managers ^including housing referrals), benefits advocacy, nutritional counseling, 
and only those dental services not covered by the regular Medicaid program 


Virginia 


The Virginia Medicaid program provides home and community-based care waiver services to people 
with AIDS through the AIDS-specific waiver 


All other states (except Massachusetts) and the District of Columbia responded that they did not have a separate Home and 
Community-Based Care Waiver program for the disabled during 1995. A number of these states noted that waiver services for the disabled 
are combined with the waiver program for the elderly. The Massachusetts Medicaid program did not complete the questionnaire. 



121 



disabled and also implements the AIDS-specific waiver. The Medicaid waiver program 
for the disabled in Mississippi is only for the orthopedically or neurologically impaired 
who have some rehabilitation potential. 

Table 6-6 lists the services provided by the waiver programs for the disabled 
that the state Medicaid administrators identified as most effective at meeting the health 
care needs of people with AIDS. Among the services mentioned are: personal care, 
assistive technologies, emergency response, case managers, respite care, 
homemaker services, home-delivered meals, and medical social services. Table 6-6 
also illustrates that a few states provided services to Medicaid recipients with HIV- 
related conditions with the separate Medicaid Home and Community-Based Care 
Waiver Programs for the Disabled. 

Summary and Conclusions 

The Medicaid Home and Community-Based Care Waiver programs allow the 
states considerable flexibility in defining the groups of people to be served and the 
range of services to provide (Lindsey, Jacobson, and Pascal, 1990). These waivers 
allow the states to implement innovative programs to provide long term care to people 
with AIDS. Given their disability status, people with AIDS who meet the more 
generous eligibility standards established for these waiver programs may receive 
services from the Medicaid Home and Community-Based Care waiver programs for 
the Elderly and Disabled or from a separate waiver for the Disabled (although these 
waiver programs for the disabled are limited in many states to the developmentally 
disabled). In addition, 15 states and the District of Columbia (implemented in 

122 



Tai}le6-6 

The Medicaid Home and Community-Based Care Waiver Program for the Disabled: 
Beneficiaries with HIV-Related Conditions and Effective Services for Peopte with HIV-Related Conditior^ 







Number of Medk^kl Recipients with 
HIV Illness Receiving Servk»s from 
Waiver Program for Disabled 




Effective Home & Community-Based Care Waiver Servnes 
for People with HIV-Related Illness 


Alabama 


persorial care, medical supplies, assistive technology, emergerwy 
response system, environmental modifications, case managers 
and respite care 


diagnosis-specific data not available 


Alaska 


specialized medk:al equipment and supplies 


1 person with HIV-felated illness 
during 1995 


Arkansas 


"Any HIV recipient couW benefit from any of these [waiver covered] 
servKes if the recipient met the criteria of the waiver." 


data not available 


California 


California has an AIDS-specifk; Home & Community-Based 
Care waiver 


2,500 adults and 300 chikjren (1 8 years or 
younger) received servk^s during 1994 
from the AIDS-specific waiver 


Connecticut 


"All waiver services are available if the person is eligible." 


data not available 


Flonda 


Fbrida has an AIDS-specific Home & Communit 


r-Based Care waiver 


Georgia 


not available/not applicable 


no person with HIV-related illness 
receiving these waiver servrces 


Hawaii 


Hawaii does not have a separate Medicaid Home and Community-Based Waiver for the Disabled, 
only for the developmentally disabled 


Illinois 


all the servk:es covered by the waiver program are effective 
at meeting the care needs of people with HIV-related illness 


data nai available 


Iowa 


Skilled and private duty nursing, irvhome respite care, irvpatient 
respite care, counseling, home health akle services, homemaker 
services, and home-delivered meals 


19 people with HIV-related illness 
received these waiver servk%s in 1994 


Louisiana 


notapplk^bie 


no person with HIV-related illness 
receiving these wa'rver services 


Maine 


personal care servk^es 


2 people with HIV-related illness 
during 1995 


Michigan 


Michigan does not have a separate Medicaid Home and Commi 


jnity-Based Waiver for the Disabled 


Minnesota 


specialized foster home/hospice 


20 people with HIV-related illness 


Mississippi 


"HIV as a kxie diagnosis would not qualify an individual for this partkxilar waiver." 


Nevada 


homemaker servk^es, case management, and 
medkal social servk»s 


1 person with HIV-related illness 
during 1995 


New Jersey 


"Persons with HIV-related illness are served under a specific waiver - 
AIDS Community Care Alternatives Program (ACCAP)" 


Pennsylvania 


Pennsylvania has an AiDS-specific Home & Community-Based ServKes waiver 


South Dakota 


not applrcable at this time 


no person with HIV-related illness 
receiving these waiver services 


Virginia 


The Virginia MedicakJ program provides home and community-based care waiver servk»s to people 
with AIDS through the AIDS-specific waiver 


All other states (except Massachusetts) and the District of Columbia responded that they did not have a separate Home and 
Community-Based Care Waiver program for the disabled during 1 995. A number of these states noted that waiver servwes for the 
disabled are combined with the waiver program for the elderiy. The Massachusetts Medicaid program did not complete the questionnaire. 



123 



December, 1996) have established AIDS-specific Medicaid Home and Community- 
Based Care waiver programs and Maine expects to implement this AIDS-specific 
waiver during 1997. 

A study of the AIDS-specific waiver in Florida found that people receiving 
services from this program were generally satisfied with the range and availability of 
services provided (Cowart and Mitchell, 1995). Case management services are 
advocated as critical to the care of people with AIDS, with the role of the case 
manager extending beyond the coordination of health services to include helping 
people with AIDS cope with their social and emotional needs (Merzel, Crystal, 
Sambamoorthi, Karus, and Kurland, 1992). As Tables 6-1, 6-3, and 6-5 demonstrate, 
the Medicaid Home and Community-Based Care waiver programs for people with 
AIDS, the Elderly and Disabled, and for the Disabled offer case management services 
in most states. Case management was identified by Medicaid administrators in the 
survey conducted for this research as among the most effective waiver services 
provided to people with AIDS. Other services provided by these waiver programs that 
the Medicaid administrators identified as most effective at meeting the care needs of 
people with AIDS are: personal care, homemaker services, assistive technologies, 
emergency response, medical social services, in-home and inpatient respite care, 
counseling, home intravenous therapy, nutritional counseling and supplements, 
attendant care, hospice care, home-delivered meals, and unlimited prescription drug 
coverage. (See Tables 6-2, 6-4, and 6-6.) State Medicaid programs not administering 
the AIDS-specific waiver program can include these services in their waiver programs 



124 



for the elderly and disabled. Since people with AIDS are typically eligible for these 
waiver programs due to their disability status, even states without the AIDS-specific 
waiver can then offer Medicaid recipients with AIDS a broad range of needed home 
care and community-based services. 

Acknowledgements: The author thanks the state Medicaid administrators who took 
the time to answer the questionnaires that collected the data necessary for this 
research. Without their cooperation this study would not have been possible. This 
research was funded by the Health Care Financing Administration, U.S. Department of 
Health and Human Services (grant #18-P-90286/5-02). The views expressed in this 
paper are those of the author. No endorsement by the Health Care Financing 
Administration, or the state Medicaid administrators, is intended or should be inferred. 



125 



References 

Baily, M., Bilheimer, L, Wooldridge, J., Langwell, K., and Greenberg, W.: 
Economic Consequences for Medicaid of Human Immunodeficiency Virus Infection. 
Healtli Care Financing Review (Annual Supplement): 97-108, 1990. 

Buchanan, R. and Smith, S.: Medicaid Policies for HIV-Related Prescription 
Drugs. Health Care Financing Review 15(3): 43-61, Spring, 1994. 

Buchanan, R.: Medicaid Eligibility Policies for People with AIDS. Social Work in 
Health Care 23(2): 15-41, Summer, 1996. 

Congressional Research Service, Medicaid Source Book: Background Data and 
Analysis (A 1993 Update) (Washington, D. C: U. S. Government Printing Office, 
1993). 

Cowart, M.E. and Mitchell, J.M.: Florida's Medicaid AIDS Waiver: An Assessment 
of Dimensions of Quality. Health Care Financing Review 16(4): 141-153, 
Summer, 1995. 

Dobson, A., Moran, D., and Young, G.: Role of Federal Waivers in the Health 
Policy Process. Health Affairs 11(4): 72-94, Winter, 1992. 

Ellwood, M.R., Fanning, T.R., and Dodds, S.: Medicaid Eligibility Patterns for 
Persons with AIDS in California and New York, 1982-1987. Journal of Acquired 
Immune Deficiency Syndromes 4:1036-1045. 1991. 

Jacobson, P., Lindsey, P.A., and Pascal, A.H.: AIDS Specific Home and 
Community-Based Waivers for the Medicaid Population. Contract No. R-3844- 
HCFA. Prepared for Health Care Financing Administration. Santa Monica, Calif. 
Rand Corporation, November, 1989. 

Lindsey, P. A., Jacobson, P.D., and Pascal, A.H.: Medicaid Home and Community- 
Based Waivers for Acquired Immunodeficiency Syndrome Patients. Health Care 
Financing Review (Annual Supplement): 109-118, 1990. 

Merzel, C, Crystal, S., Sambamoorthi, U., et al.: New Jersey's Medicaid Waiver 
for Acquired Immunodeficiency Syndrome. Health Care Financing Review 13(3): 
27-44, Spring, 1992. 

Miller, N.: Medicaid 2176 Home and Community-Based Care Waivers. Health 
Affairs 11(4): 162-171, Winter, 1992. 



126 



Chapter 7 

State-Funded Medical Assistance Programs: 
Sources of Health Coverage for People with HIV Illness^ 

Introduction 

Public programs, primarily Medicaid, have become the primary payers for the 
health services provided to people with HIV disease, covering the care of 53 percent 
of people infected with HIV and 62 percent of people with HIV who have progressed 
to AIDS.^ State governments spent $401.9 million of state-only funds (excluding 
Medicaid) on AIDS-related patient care during 1992, an increase of 22 percent over 
spending for this care during 1991.^ In spite of this public spending, however, 31 
percent of asymptomatic people infected with HIV, 21 percent of symptomatic people 
infected with HIV (but without AIDS), and 12 percent of people with AIDS lack any 
public or private health insurance coverage.^ 

An survey of state Medicaid officials working with Medicaid eligibility policies 
conducted during 1993 found that a number of states implement medical assistance 
programs (MAPs) funded only with state and/or local government (non-Medicaid) 
funds.'* A review of the literature was unable to discover any published papers that 
describe these state-funded MAPs. The objective of this research is to describe these 
state-funded MAPs and to discuss how these programs can be used to provide health 
services to people infected with HIV who lack other coverage. 
The Study Methodology 

Because the literature contains no discussion or description of these state- 
funded MAPs, a two-step survey process was used to identify states that implement 



"This research is under publication review. 

127 



these programs. The first step was the identification of states implementing state- 
funded MAPS and the second step was a survey of the administrators of these 
programs. The first step of the process involved a new survey of Medicaid 
administrators who work with Medicaid eligibility policies to identify states implementing 
state-funded MAPs. These state Medicaid eligibility officials were surveyed because 
they are in the position to know of other state health programs for low-income people 
given that Medicaid is a health program for the poor. In addition, Medicaid eligibility is 
often coordinated with other public programs. The questionnaire asked these 
Medicaid eligibility officials if their state implemented "a medical assistance program 
(MAP) to pay for the health care provided to the medically indigent (separate from 
Medicaid) that is 100 percent funded by state and/or local governments during 1995?" 
If their state implemented a MAP, the questionnaire asked the Medicaid administrator 
to provide the contact person and mailing address for this indigent care program. The 
Medicaid survey process began in June, 1995, with three additional mailings sent to 
the states not returning a questionnaire. When the survey was completed in June, 
1996, eligibility administrators 47 Medicaid programs (including the District of 
Columbia) had returned questionnaires.'' 

Based on the results of the survey of Medicaid eligibility officials, 27 states were 
identified as possibly having state-funded MAPs. A state-funded MAP questionnaire 
was developed, which began with "Does your state have a medical assistance 
program (MAP) for low-income people (separate from Medicaid) that is 100 percent 
funded by state and/or local governments during 1997?" The questionnaire included 



''Massachusetts, Nevada, Oklahoma, and Virginia did not participate in the survey. 

128 



three sections: MAP eligibility policies, MAP covered health services, and MAP 
payment levels for care. 

The MAP survey process began in March, 1997. Three additional mailings of 
the questionnaires were sent to the states not responding, with questionnaires 
returned by 22 states as of November, 1997.*^ Of these 22 states, seven states 
reported that they did not have a MAP for low-income people that is 100 percent 
funded by state and/or local governments during 1997.^ The responses from the 
states reporting the implementation of state-funded MAPs are summarized into five 
tables that are presented in this research. 

MAP Eligibility Policies 

The questionnaire asked the MAP administrators to provide medical and 
financial eligibility policies that were implemented for the state-funded MAPs during 
1997. As Table 7-1 illustrates, these eligibility criteria for MAP benefits vary from state 
to state. Typically, however, the financial eligibility criteria are restrictive, with most 
states establishing low income limits. The Delaware MAP is an exception, establishing 
relatively high income limits. However, this MAP in Delaware is restricted to people 
with a diagnosis of end stage renal disease, recipients of a kidney transplant, or to 
dialysis patients. 

The survey asked the MAP administrators if the financial eligibility process 
included a spend down provision, defined on the questionnaire as "allowing the 

'^Responses were not received from the District of Columbia, Idaho, New York, 
Pennsylvania, and Rhode Island. 

^Indiana, Louisiana, North Carolina, North Dakota, Texas, Vermont, and West Virginia 
responded to the survey that they did not implement a MAP for low-income people that 
is 100 percent funded by state and/or local governments during 1997. 



129 



Table 7-1 

State-Funded Medical Assistance Programs (MAPs) for Low-Income People: 
Eligibility Policies During 1997 







To be Financially Eligible for 
MAP, Gross Monthly Income 
during 1997 Cannot Exceed: 






Medical 
Eligibility 
Requirements 
for MAP in 1997: 


Do MAP Eligibility 
Detennination 

Procedures Include 
Spend Down? 


Compared to 1995, 
Rnancial Eligibility 
Criteria for MAP in 
1997 Became: 


The Length of 
Time for the MAP 
Eligibility Process 
in 1996: 


Was There a 
Waiting List for 
MAP Benefits 
during 1996? 


Estimates of the 
Percentage of 
MAP Beneficiaries 
with HIV in 1996: 


1 -Person 
Household 


4-Person 
Household 


Alaska 


yes* 


$300/month 


$600/month 


no 


remain the same 


< 30 days 


no 


*prot>ably close to 0" 


"Immediate need for in-patient hospital, nursir 
chemotherapy, people who are terminalti 


)g home, related transportation, or drugs and/or physician visits for cancer patients receiving 
/ ill, and people who have diabetic seizures, or hypertension, or chronic mental illness." 


Arizona 


none 


$266/month 


$446/month 


yes 


remain the same 


30 days 


no 


1% 


California 




The MAP is administered b 
1 


y counties artd MAP 


9ligibility policies are 


determined at the c 


ounty level. 




Colorado 


emergency care, 
serious threat, and 
other medical care 


(sliding inc 


x>me scale) 


no 


remain the same 


not available 


no 


unknown 


Connecticut 


none 


$473/month 


$908/month 


yes 


remain the same 


60 days 


no 


1% 


Delaware 


yes- 


$1 ,900/month 


$3,900/month 


no 


remain the same 


14-21 days 


no 


< 10% 


** Diagnosis of end stage renal disease, receive kidney transplant, or be on dialysis. The program is a Chronic Renal Disease Program.* 


District of 
Columbia 


If the individua 


1 does not meet 


Medicaid eligibili 


y criteria, the eligibility worker determines 


if [the client] is eligible for D.C. Me< 


Jical Charities.** 


Idaho 




"Local medical 


assistance progr 


ams require that Mac 


icaid be denied befo 


re application for kx 


»l assistance.*' 




Maryland 


none 


$9.050/year 


$11,330/year 


no 


remain the same 
(COLA adjustment) 


not available 


no 


not available 


Michigan 


none 


$246/month 


NA*** 


yes 


remain the same 


45 days 


no 


unknown 


*** "We have no families receiving MAP. Income limit for two is $401 [per month]." 




Nebraska 


yes~ 


$645/month | $1,300/month 
(100% of federal poverty level) 


yes ($392 a month 
for 1 or 2 people) 


remain the same 


60 days 


no 


2% 


- "Client must meet the SSI severity disability requirements but not the one year duration. They must be disabled for 180 days for the state program." 


New Jersey 


none 






yes (vwth a 
different program) 


remain the same 


not available 


no 


not available 


— 1-person household: $199/month employable; $269/month unemployable. 4-person household: $280/moth employable; $420/month unemployable. 


New York 


"The application, review process, and collection of documentation are the same [as Medicaid]. Different income standards may apply."'^ 
Ill 1 1 II 


Pennsylvania 


"Applications for the state-funded MAP are taken at the same offices which handle Medicaid applications. The eligibility determination process 

is essentially the same as the Medicaid process."* 


Rhode Island 


The state- 


unded MAP use 


>s the same data 


lase for [Medicaid] e 


igibility determinatior 


1 [to determine] if el 


gibility exists foi 


Medicaid.** 


South Dakota 


limited to inpatient 
hospital care 






yes 


more restrictive 
in 1997 


30 days 


no 


not available 


'Eligibility is based on income and resources and compared to the household's monthly expenses. We compute the household's 

disposable income and determine how much the household should be able to pay on the hospital bill." 


Utah 


none 


$387/month 
(net income) 


$602/month 
(net income) 


yes 


remain the same 


30 days 


no 


<1% 


Washington 


yes# 


$349/month 


$349/month 


not state program 


remain the same 


45 days 


no 


<1% 


tfclient must be incapacitated for 90 days 


Wisconsin 


yes## 


varies by county 
1 


varies by county 


more restrictive 
in 1997 


5 days 


no 


<1% 


##Counties administer the program and not all counties have a MAP or a comprehensive medical program. In some counties a person 
must be medically disabled; other counties do not have this medical eligibility requirement. 


Wyoming 


none 


100% federal 
poverty level 


not 
applicable 


no 


remain the same 


do not 
know 


no 


<1% 


Note: All other states either did not have MAPs during 1997 or did not respond to the survey. 


'^These responses were to the 1995 survey of Medicaid eligibility administrators, not the 1997 survey of MAP administrators. 
The MAP administrators in these states did not respond to the 1997 survey. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1997 survey of state 
program administrators, state-funded medical assistance programs. This research was funded by a grant from the 
Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



130 



applicant to deduct the cost of medical care from income levels and using this 
medical-cost adjusted income level for eligibility determination." This spend down 
provision allows people with higher incomes who have large medical expenses to 
qualify for MAP coverage. As Table 7-1 documents, not all state-funded MAPs allow 
spend down as part of the eligibility determination process. 

The state-funded MAPs in South Dakota and Wisconsin responded to the 
survey that compared to 1995, financial eligibility criteria became more restrictive 
during 1997, with eligibility standards remaining the same in the other states 
participating in the study. The questionnaire asked the MAP administrators to estimate 
the length of time for the eligibility process during 1996, from the submission of the 
application to the beginning of MAP benefits. Table 7-1 presents these estimates of 
the number of days that eligibility determination took in the various states. No state 
reported a waiting list of people for MAP benefits during 1996. The eligibility section of 
the questionnaire concluded by asking the MAP administrators to estimate the number 
of people infected with HIV who received MAP benefits during 1996. As Table 7-1 
illustrates, these state-funded MAPs did not serve large numbers of people with HIV 
during 1996. Typically less than one percent of MAP beneficiaries were infected with 
HIV, according to the estimates from the MAP administrators. 

MAP Coverage of Health Services 

The questionnaire provided the MAP administrators with the following list of 
health services, with a request to "please circle any of the following services covered 
and reimbursed by the MAP in your state during 1997: 



131 



physician services 
emergency room services 
X-ray services 
substance abuse services 
skilled nursing care at home 
home aerosolized drug therapy 
inpatient respite care 
in-home diagnostic testing 
home intravenous therapy 
home-deUvered meals 
child care services 



dental care 



inpatient hospital care 
clinic services 
nursing home care 
mental health counseling 
homemaker services 
adult day care 
durable medical equipment 
rehabiUtation services 
transportation services 
housing referrals 
legal services 

Other (please describe): 



outpatient hospital care 
lab services 
prescription drugs 
home health aide 
personal care services 
in-home respite care 
hospice care 
case managers 
benefits advocacy 
HTV support groups 
podiatry services 



The survey responses, detailing the health services covered by the state-funded 
MAPS during 1997, are presented in Table 7-2. The range of MAP-covered services is 
comprehensive in most of the states. 



Drug therapies for treatment of HIV infection and related opportunistic infections 
have emerged as the primary method for improving the quality of life and increasing 
the length of survival for people with HIV disease. Therapy with HIV protease 
inhibitors has been shown to decrease viral loads and elevate CD4 cell counts with 
relatively few adverse effects.^ ^ Recent studies demonstrate that these drugs, when 
used in combination with nucleoside antiretrovirals, slow the progression of HIV 
disease'^ and have beneficial effects lasting for as long as at least one year.® In 
addition, AIDS researchers presenting at an Interscience Conference on Antimicrobial 
Agents and Chemotherapy in Toronto, Canada in September, 1997 concluded that the 
three-drug therapy continues to fight off HIV in 79 percent of patients treated for two 
years and that the immune system strengthens the longer the drugs work.^ 

Various drug therapies are used to treat or prevent Pneumocystis carinii 
pneumonia, ^° toxoplasmosis," mycobacterium avium complex, and CMV 



MAP Health Services and HIV Care 



132 



Table 7-2 

Health Services Covered by the MAP During 1997 





The Health Services Funded by the MAP During 1997: 


Alaska 


physician services, inpatient hospital care, nursing home care, transportation services, and prescription drugs 


Arizona 


physician services, emergency room services. X-rays, dental care (adults - emergency; children - full services), 
inpatient hospital care, clinic services, nursing home care (up to 90 days following hospitalization), durable medical 
equipment, transportation services, outpatient hospital care, lab services, prescription drugs, and podiatry services 


California 


The MAP is administered by counties and MAP policies for the coverage of health services 
are determined at the county level. 


Colorado 


physician services, emergency room services. X-rays, substance abuse services, dental care, inpatient hospital care, 
clinic services, mental health counseling, rehabilitation services, outpatient hospital care, lab services, prescription drugs, 
hospice care, case managers, benefits advocacy, and podiatry services 


Connecticut 


physician services, emergency room services. X-rays, substance abuse services, home aerosolized drug therapy, home 
intravenous therapy, dental care, inpatient hospital care, clinic services, mental health counseling, durable medical 
equipment, rehabilitation services, transportation services, outpatient hospital care, lab services, prescription drugs, 

home health aide, hospice care, and podiatry services 


Delaware 


transportation services, medications (prescription or over-the-counter), and nutritional supplements 


District of 
Columbia 


According to the 1995 survey of Medicaid eligibility administrators, the District of Columbia has a state-funded MAP 
However, the MAP administrators did not respond to the survey. According to the response to the Medicaid survey, the 
services covered by the MAP (D.C. Charities) in the District of Columbia are the same as the services covered by Medicaid. 


Idaho 


According to the 1995 survey of Medicaid eligibility administrators, Idaho has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Maryland 


prescription drugs 


Michigan 


physician services, emergency room services. X-rays, transportation services (emergency only), outpatient 
hospital care, lab services, prescription drugs, pap smears, mammograms, and immunizations 


Nebraska 


physician services, emergency room sen/ices. X-rays, substance abuse services (for under 21), skilled nursing care at 
home, home aerosolized drug therapy, inpatient respite care, in-home diagnostic testing, home intravenous therapy, 
child care services, dental care, inpatient hospital care, clinic services, nursing home care, mental health counseling, 
durable medical equipment, transportation services, outpatient hospital care, lab services, prescription drugs, 
home health aide, personal care services, hospice care, and podiatry services 


New Jersey 


physician services, X-rays, skilled nursing care at home, home aerosolized drug therapy, in-home diagnostic testing, 
home intravenous therapy, dental care, clinic services, nursing home care, mental health counseling, homemaker services, 
durable medical equipment, transportation services, lab services, prescription drugs, home health aide, personal care 
services, in-home respite care, hospice care, case managers, and podiatry services 


New York 


According to the 1995 survey of Medicaid eligibility administrators, New York has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Pennsylvania 


According to the 1995 survey of Medicaid eligibility administrators, Pennsylvania has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Rhode Island 


According to the 1995 survey of Medicaid eligibility administrators, Rhode Island has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


South Dakota 


physician services, emergency room services. X-rays, dental care, inpatient hospital care, clinic sen/ices, 
nursing home care, durable medical equipment, outpatient hospital care, lab services, and prescription drugs. 


Utah 


physician services, emergency room services. X-rays, skilled nursing care at home, in-home diagnostic testing, 
home intravenous therapy, dental care, clinic services, nursing home care, transportation sen/ices, 
outpatient hospital care, lab services, prescription drugs, and podiatry services 


Washington 


none mentioned in survey response 


Wisconsin 


physician services, emergency room services. X-rays, home aerosolized drug therapy, inpatient respite care, 
in-home diagnostic testing, home intravenous therapy, home-delivered meals, dental care, inpatient hospital care, 
clinic sen/ices, durable medical equipment, rehabilitation services, transportation services, housing referrals, outpatient 
hospital care, lab services, prescription drugs, hospice care, case managers, benefits advocacy, and podiatry services* 


"("Counties in Wisconsin define what medical services will be offered by the county. Counties can choose to offer 
comprehensive services or no services at all. Counties also define eligibility criteria.') 


Wyoming 


prescription dmgs and oxygen 


Note: AJI other states either did not have MAPs during 1997 or did not respond to the survey. 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1997 survey of state 
program administrators, state-funded medical assistance programs. This research was funded by a grant from the 
Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



133 



retinitis. Infusions of interieukin-2 produced substantial and sustained increases in 
CD4 counts with no increase in plasma HIV RNA levels in patients with HIV.^'* The 
incidence rates of a number of opportunistic infections among people with HIV have 
declined over the past five years and are being diagnosed at a later stage of HIV 
disease due to the effective use of antiviral drugs, targeted preventive therapy, and 
more comprehensive clinical management of the diseaseJ^ 

Given the importance of drug therapies to HIV care, the survey asked the 
administrators if the MAP in their state covered prescription drugs during 1997, with all 
MAPS reporting coverage of prescription drugs. The administrators also were asked if 
the MAP in their state has a drug formulary, defined as "a list of selected drugs that 
the program covers." Not all state-funded MAPs implemented formularies, as Table 7- 
3 documents. However, the questionnaire asked if during 1997 the MAP in their state 
covered all drugs approved by the Food and Drug Administration (FDA) H!V-related 
conditions and treatments? As Table 7-3 demonstrates, the state-funded MAPs 
generally covered all drugs approved by the FDA for HIV-related treatments and 
conditions. Alaska responded to this question that coverage is "based on [the] need 
for specific services [and] not linked to HIV." 

The questionnaire asked the administrators to identify "the most effective 
services at meeting the health care needs of people with HIV-related illnesses" from all 
services covered by the MAP in their state during 1997. As Table 7-3 illustrates, 
prescription drugs and physician services were the most frequently mentioned MAP- 
covered services that are beneficial to HIV care. 

The survey asked the administrators if the MAP in their state covered the use of 
any service when a Medicaid recipient had care needs in excess of any Medicaid 

134 



Table 7-3 

MAP Coverage of Effective Health Services for People with HIV and Coordination with Medicaid During 1997 





Does the MAP 
Have a 1997 
Drug Formulary? 


Are All FDA- 
Approved Drugs 
for HIV Covered? 


Of All Services Covered 
by the MAP, the Most 
Effective for HIV Care Are: 


If Medicaid Limits Utilization of Care 
Does the MAP Cover Services 
in Excess of Medicaid Limits? 


Does the MAP Cover 
HIV-Related Services Not 
Covered by Medicaid? 


Alaska 


no 


no- 


no answer given 


no 


no 


"Eligibility is based on the need for specific services and is not linked to HIV.* 


Arizona 


no 


yes 


data not available 


rK> Medicaid utilization limits 


no 


California 


The MAP is 


administered by cou 


nties and MAP policies for the 


coverage of health services are detem 


lined at the county level. 


Colorado 


no 


unknown 


data rtot available 


no (a person is not eligible for 
both the MAP and Medicaid) 


no 


Connecticut 


yes 


yes 




no Medicaid utilization limits 


no 


""Drug therapy is helpful, as are all other services provided, depending on the individual's situation/needs/treatment plan.* 


Delaware 


yes 


yes 


medications and nutritional 
supplemerrts 


no Medicaid utilization limits 


yes - nutritional 
supplements 


District of 
CoiumlJia 


According to the 1 995 survey of Medicaid eligibility administrators, the District of Columbia has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Idaho 


According to the 1995 survey of Medicaid eligibility administrators, Idaho has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Maryland 


yes 


no answer 


program covers only 
pharmacy services 


no Medicaid utilization limits 


no 


Michigan 


yes 


"Most are covered, 
based on pre- 
scril>er request" 


none mentioned 


no 


no 


Nebraska 


no 


yes 


physician visits 


no Medicaid utilization limits 


no answer 


New Jersey 


no 


yes 


unknown 


no ("We follow the same guidelines 
as Medicaid on utilization limits.") 


no answer 


New York 


According to the 1995 survey of Medicaid eligibility administrators. New York has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Pennsylvania 


According to the 1995 survey of Medicaid eligibility administrators, Pennsyhrainia has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Rhode Island 


According to the 1995 survey of Medicaid eligibility administrators, Rhode Island has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


South Dakota 


yes 


yes 


no answer 


some counties use Medicaid 
limits, others do not 


no 


Utah 


same formulary 
as Medicaid 


yes 


physician services and 
prescription drugs 


no 


no 


Washington 


yes 


yes 


case management 




yes - alternative treatment 
providers~ 


****Services are based on medical necessity. Limitations are placed on certain services, i.e., therapy, but additional services 

can be obtained through and Exception to the Policy.* 


^Examples of alternative treatment providers are naturopath and chiropractor services for adults 


Wisconsin 


no 


generally yes — 


physician services and 
prescription drugs 


yes, with prior authorization 




— "Generally yes in those counties that provide such services." 


"The MAP generally covers the same services as [Medicaid] does. However, some counties limit services 

to those covered by [Medicaid] and others do not" 


Wyoming 


no 


yes 


prescription drugs 


no 


no 


Note: All other states either did not have MAPs during 1997 or did not respond to the survey. 


Source: Robert J. Buchanan, Ph.D.. Department of Community Health, University of Illinois, a 1997 survey of state 
program administrators, state-funded medical assistance programs. This research was funded by a grant from the 
Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 1 8-P-90286/5-01 ). 



135 



limits. As Table 7-3 indicates, there were no Medicaid utilization limits during 1997 in 
many of the states with state-funded MAPs. Wisconsin reported, however, that the 
state-funded MAP in that state can supplement Medicaid coverage with prior 
authorization. In another Medicaid-related question, the administrators were asked if 
the state-funded MAP covered any health service often needed by people with HIV- 
related illnesses that the state Medicaid program does not cover. The state-funded 
MAP in Delaware reported the coverage of nutrition supplements and the MAP in 
Washington State reported coverage of alternative treatments such as naturopath and 
chiropractor services for adults. 

MAP Payment Levels 

To assess the payment levels for health services implemented by the state- 
funded MAPS, the MAP administrators were asked to compare the MAP payment to 
the Medicaid payment in their state for inpatient hospital care, physician services,and 
home health services. These are health services often needed by people with HIV 
disease. The questionnaire presented the following options for survey responses for 
each of the three health services: 

less than 50% of Medicaid rate 50-90% of Medicaid rate 91-110% of Medicaid rate 

111-150% of Medicaid rate over 150% of Medicaid rate no MAP coverage of this service 

As Table 7-4 documents, the MAP payment levels during 1997 were typically 
below the Medicaid payment level for each of the three health services in most of the 
states reporting data. The state-funded MAPs in Arizona and Connecticut responded 
to the survey that the MAP payments are equal to the Medicaid payment levels. The 
MAP in Wisconsin responded that "state law limits the MAP payment to 'at or below' 
the Medicaid rate. Some counties pay the Medicaid rate, other counties pay a lower 



136 



Table 7-4 

MAP Payments for Selected Health Services During 1997: A Comparison with Medicaid 





Comparison of the 1997 MAP 
Payment for Inpatient Hospital 
Care to the Medicaid Level: 


Comparison of the 1997 MAP 

Payment for Physician 
Services to the Medicaid Level: 


Comparison of the 1997 MAP 

Payment for Home Health 
Services to the Medicaid Level: 


Alaska 


less than 50% of Medicaid rate 


91-110% of Medicaid rate 


no MAP coverage of this service 


Arizona 


payments are the same 


payments are the same 


no MAP coverage of this service 




The MAP is administered by counties and MAP payment policies are determined at the county level. 




The MAP contracts with 
hospitals 


Physicians are paid by the 
hospitals 


no MAP coverage of this service 


Connecticut 


rates identical to Medicaid rates 


rates identical to Medicaid rates 


rates identical to Medicaid rates 


Delaware 


no MAP coverage of this service 


no MAP coverage of this sen/ice 


no MAP coverage of this service 


District of 
Columbia 


According to the 1995 survey of Medicaid eligibility administrators, the District of Columbia has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Idaho 


According to the 1995 survey of Medicaid eligibility administrators, Idaho has a state-funded MAP. However, the 
MAP administrators did not respond to the survey. According to the response to the Medicaid survey, the 
klaho MAP reimburses providers with Medicaid rates. 


IVKU yiai lu 


no MAP coverage of this service 


no MAP coverage of this service 


no MAP coverage of this service 


Michigan 


no MAP coverage of this service 


50-90% of Medicaid rate 


no MAP coverage of this service 


Nebraska 


50-90% of Medicaid rate 


50-90% of Medicaid rate 


50-90% of Medicaid rate 


New Jersey 


data not available 


data not available 


data not available 


New York 


According to the 1995 survey of Medicaid eligibii'rty administrators. New York has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Pennsylvania 


According to the 1995 survey of Medicaid eligibility administrators, Pennsylvania has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Rhode Island 


According to the 1995 survey of Medicaid eligibility administrators, Rhode Island has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


South Dakota 


less than 50% of Medicaid rate 


less than 50% of Medicaid rate 


no MAP coverage of this service 


Utah 


no MAP coverage of this service 


91-1 10% of Medicaid rate 


91-110% of Medicaid rate 


Washington 


no answer 


no answer 


no answer 


Wisconsin 


50-90% of Medicaid rate* 


91-1 10% of Medicaid rate* 


50-90% of Medicaid rate* 


*State law limits the MAP payment to 'at or below" the Medicaid rate. Some counties pay the Medicaid rate, 

other counties pay a lower rate. 


Wyoming 


no MAP coverage of this service 


no MAP coverage of this service 


no MAP coverage of this service 



Note: All other states either did not have MAPs during 1997 or did not respond to the survey. 

Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1997 survey of state 
program administrators, state-funded medical assistance programs. This research was funded by a grant from the 
Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



137 



rate." These relatively low MAP payment levels may make it difficult for MAP 
beneficiaries to gain access to health services. For example, lower Medicaid payment 
levels have affected the physician services available to Medicaid recipients, with fewer 
physicians participating in Medicaid in states with lower physician payment levels and 
physicians who do participate limit their practice by treating fewer Medicaid 
patients.^® In addition, in states with Medicaid payment levels that are lower than 
other insurer's rates. Medicaid patients tend to receive care from high volume 
Medicaid practices, hospital outpatient departments, emergency rooms, or local health 
department clinics. 

MAP Utilization Limits 

The survey asked the administrators if the state-funded MAP set "limits to the 
benefits that a MAP beneficiary may receive (e.g., six months of health coverage or 
$2,500 in expenditures for care) from this program? As Table 7-5 presents, the 
majority of state-funded MAPs did not limit the benefits a MAP beneficiary could 
receive during 1997. Some of the state-funded MAPs which limited benefits allowed 
exemptions to these limits for medical necessity and other MAPs did not. A similar 
question asked about MAP utilization limits, with the responses summarized in Table 7- 
5. 

The survey concluded by asking the administrators to compare MAP spending 
levels in their state for fiscal year 1996 to MAP spending levels for fiscal year 1997. 
The questionnaire offered the following options for responses: 

increase - 5% increase 6 - 10% increase over 10% no change 

decrease -5% decrease 6 - 10% decrease over 10% 



138 



I 

I 



Table 7-5 

Utilization Limits on MAP Coverage and MAP Spending Levels During 1997 





Are There Limits 
to MAP Benefits 
During 1997? 


If Yes, Are There 

Exceptions for 
Medical Necessity? 


Are There Utilization 
Limits for Health 
Services During 1 997? 


If Yes, Are There 

Exceptions for 
Medical Necessity? 


MAP Spending Levels 
for Fiscal Year 1997 
Compared to 1996 Levels: 


Alaslta 


8 days inpatient care 
12 physician visits 


no 


8 days inpatient care 
12 physician visits 


no 


decrease over 10% in 1997 


Arizona 


eligibility reviewed 
every 6 months 


no 


no 


not applicable 


increase 0-5% in 1997 


California 


The MAP 


is administered by the 


counties and MAP utilizatioi 


n policies are determined 


at the county level. 


Colorado 


no 


not applicable 


no 


not applicable 


increase 0-5% in 1997 


Connecticut 


no 


not applicable 


no 


not applicable 


decrease 6-10% in 1997 


Delaware 


no - based on con- 
tinued financial need 


not applicable 


no 


not applicable 


increase over 10% in 1997 


District of 
Columbia 


According to the 1995 survey of Medicaid eligibility administrators, the District of Columbia has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 
II II 


Idaho 


According to the 1995 survey of Medicaid eligibility administrators, Idaho has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Maryland 


no 


not applicable 


no 


not applicable 


unkrwwn 


Michigan 


no 


not applk:able 


no 


not applicable 


increase 6-10% in 1997 


Nebraska 


no 


not applicable 


no 


not applicable 


increase 0-5% in 1997 


New Jersey 


no 


rK>t applicable 


no 


not applicable 


increase over 10% in 1997 


New York 


According to the 1995 survey of Medicaid eligibility administrators. New York has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Pennsylvania 


According to the 1995 survey of Medicaid eligibility administrators, Pennsylvania has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


Rhode Island 


According to the 1995 survey of Medicaid eligibility administrators, Rhode Island has a state-funded 
MAP. However, the MAP administrators did not respond to the survey. 


South Dakota 


no 


not applicable 


counties may establish 
their own limits 


no answer 


increase 0-5% in 1997 


Utah 


no 


not applicable 


no 


not applicable 


no change 


Washington 


yes/no* 


yes 




yes 


increase 6-10% in 1997 


"This is a yes and no question. No, as long as the client remains eligible for a MAP. There is no cap dollar amount limitation 
under the current fee-for-service reimbursement system. Yes, there are limitations within state-funded programs, i.e.. 
Medically Indigent - eligible if condition is acute and emergent and the person meets the financial criteria. 


" therapies limited to 12 visits per year, psychological evaluation - once per year, and psychiatric visit - 1 hour/month 


Wisconsin 


yes*** 1 yes | yes- | yes | decrease over 1 0% in 1 997 


****Some counties have no limits, while others have dollar limits. Most have a county residence requirement and duration limits.' 


~"No state limits, but some counties limit utilization vflth prior authorization or time or eligibility limits." 


Wyoming 


3 prescriptions 
per month 


no 


3 prescriptions 
per month 


no 


decrease over 10% in 1997 



Note: All other states either did not have MAPs during 1997 or did not respond to the sun/ey. 

Source: Robert J. Buchanan, Ph.D., Department of Community Health. University of Illinois, a 1997 survey of state 
program administrators, state-funded medical assistance programs. This research vras funded by a grant from the 
Health Care Hnancing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



139 



As Table 7-5 illustrates, the majority of states responding to the survey reported 
that MAP spending levels increased in 1997 compared to 1996 levels. However, three 
ofthe four states reporting decreased MAP spending in 1997 noted that this decrease 
was over 10 percent. In contrast, half of the states reporting increased spending in 
1997 indicated that the increase was five percent or less. 

Summary and Conclusions 

A number of states implement state-funded MAPs to provide health care to low- 
income people. However, a review of the literature revealed no published papers that 
describe these programs. A two-step survey process was used to identify states that 
implemented state-funded MAPs during 1997 and to collect data describing eligibility, 
coverage, and payment policies for these programs. 

Typically, eligibility requirements for these programs are restrictive but the range 
of health services covered tends to be comprehensive in most states. MAP payment 
levels for the health services included in the study typically are less than the Medicaid 
payment level, which may make it difficult for MAP beneficiaries to gain access to 
these services, in spite of these eligibility and payment level restrictions, these state- 
funded MAPs can provide health coverage to people with HIV disease who lack other 
health insurance. As Table 7-2 illustrates, most of these state-funded MAPs cover a 
comprehensive range of health services needed by people infected with HIV, including 
acute care services and prescription drugs, as well as necessary home and 
community-based care and support services. 



140 



Acknowledgment: The author thanks the Medicaid administrators who helped identify 
the states with MAPs and the MAP administrators who took the time to complete the 
questionnaires. Without their assistance and cooperation, this study would not have 
been possible. This research was funded by the Health Care Financing 
Administration, U.S. Department of Health and Human Services (grant #18-P-90286/5- 
02). The views expressed in this paper are those of the author. No endorsement by 
the Health Care Financing Administration is intended or should be inferred. 



141 



References 



1. Schur, C. and Berk, M. Health Insurance Coverage of Persons with HIV-Related 
Illness: Data from the ACSUS Screener . AIDS Costs and Services Utilization Survey 
(ACSUS) Report No. 2, Rockville, MD: Agency for Health Care Policy and 
Research, 1994. 

2. Intergovernmental Health Policy Project, reported in Association of State and 
Territorial Health Officials. HIV/AIDS Update. Vol. 4, No. 6, (1993). 

3. Schur, C. and Berk, M. Health Insurance Coverage of Persons with HIV-Related 
Illness: Data from the ACSUS Screener. AIDS Costs and Services Utilization Survey 
(ACSUS) Report No. 2, Rockville, MD: Agency for Health Care Policy and 
Research, 1994. 

4. Robert J. Buchanan, "Medicaid Eligibihty for People with AIDS: A 1993 Survey of 
the State Medicaid Programs." The results of the survey focusing on Medicaid 
ehgibility policies are published in R. Buchanan, 1996, "Medicaid Eligibility PoUcies 
for People with AIDS," SOCIAL WORK IN HEALTH CARE, Vol. 23, No. 2. 

5. Markowitz, et al. "A Preliminary Study of Ritonavir, an Inhibitor of HIV-1 Protease, 
to Treat HIV-1 Infection." New England Journal of Medicine . 1995; 333: 1534-1539. 

6. Shapiro, et al. 'The Effect of High-dose Saquinavir on Viral Load and CD4+ T-Cell 
Counts in HIV-infected Patients." Annals of Internal Medicine . 1996; 124: 1039- 
1050. 

7. Hammer, et al. "A Controlled Trial of Two Nucleoside Analogues Plus Indinavir in 
Persons with Human Immunodeficiency Virus Infection and CD4 Cell Counts of 200 
per Cubic Millimeter or Less." New England Journal of Medicine . 1997; 337: 725- 
730. 

8. Gulick, et al. 'Treatment with Indinavir, Zidovudine, and Lamivudine in Adults with 
Human Immunodeficiency Virus Infection and Prior Antiretroviral Therapy." New 
England Journal of Medicine . 1997; 337: 734-739. 

9. Waldholz, M. "AIDS Cocktail Has Longevity, Study Suggests." The Wall Street 
Journal . September 29, 1997, pp. B1, B8. 

10. Hughes, et al., 1993. "Comparison of Atovaquone (566C80) with Trimethoprim 
Sulfamethoxazole to Treat Pneumocystis carinii pneumonia in Patients with AEDS." 
New England Journal of Medicine 328: 1521-1527. 



142 



11. Girard, et al., 1993. "Dapsone-pyrimethamine Compared with Aerosolized 
Pentamidine as Primary Prophylaxis Against Pneumocystis carinii pnemnonia and 
Toxoplasmosis in HTV Infection." New England Journal of Medicine 328: 1514-1520. 

12. Horsburgh, C.R., 1996. "Advances in the Prevention and Treatment of 
Mycobacterium Avium Disease." New England Journal of Medicine 335: 428-430. 

13. Palazzolo, G., 1993. "CMV Experimental Treatment Overview (Part 1)." AIDS 
Treatment News 15 January, 1993: 1-8. 

14. Kovacs, et al., 1996. "Controlled Trial of Interleuldn-2 Infusions in Patients Infected 
with the Human Inmmimodeficiency Virus." New England Journal of Medicine 335: 
1350-1356. 



15. Moore and Chaisson, 1996. "Natural History of Opportunistic Disease in an HIV- 
infected Urban Clinical Cohort." Armals of Internal Medicine 124: 633-642. 



16. Cromwell, J. and Mitchell, J. "An Economic Model of Large Medicaid Practices," 
Health Services Research . 1984, Vol. 19: 197-218; 

Held, P. and Holahan, J. "Containing Medicaid Costs in an Era of Growing Physician 
Supply," Health Care Financing Review . 1989, Vol. 7: 49-60; 

Perloff, J., Kletke, P., and Neckerman, K. "Recent Trends in Pediatric Participation 
in Medicaid." Medical Care. 1986, Vol. 24: 749-60. 

17. Reisinger, Colby, and Schwartz, "Medicaid Physician Payment reform: Using the 
Medicare Fee Schedule for Medicaid Payments." American Journal of Public Health . 
1994, Vol 84: 553-60. 



143 



Chapter 8 

Assessments of the Coverage of HIV-Related Care by Public Programs: 
A Survey of AIDS Service Organizations'* 

Introduction 

Public programs are the primary payers of the health care provided to people 
infected with HIV. A study of over 5,800 people who were HIV positive found that 
public programs provided health coverage to 53 percent of these people in 1991.^ 
The same study discovered that these public programs play an even greater role in 
the coverage of the sickest HIV-infected patients, paying for the health care of 62 
percent of people with full-blown AIDS. In addition to the state Medicaid programs 
(the largest public payer of AIDS-related care), the Medicare program and the 
programs funded by Titles I and II of the Ryan White CARE Act are important payers 
of this care. Given the importance of the public programs in paying for HIV-related 
care, how effective are these programs at meeting the needs of people with HIV 
illness? To gain insight into how public programs meet the care needs of people with 
HIV illness, a group of AIDS service organizations (ASOs) were surveyed. This 
research presents the results of that survey. 

Background 
The Ryan White CARE Act Programs 

Title I of the Ryan White CARE Act provides funds to eligible metropolitan areas 
(EM As) with the largest number of AIDS cases. EM As are required by the CARE Act 
to provide a continuum of outpatient and ambulatory health and support services to 



This research currently is under publication review at a health policy 
journal. 

144 



people with HIV, including case management services and comprehensive treatment.^ 
Title II of the CARE Act allocates funds to the states to provide HIV-related medical 
and support services, allowing the states to implement HIV consortia programs, 
HIV/AIDS drug assistance programs, home and community-based care programs, 
and health insurance continuation programs.^ 

HIV consortia funded by Title 11 of the CARE Act can provide a number of 
services to eligible people with HIV. For example, HIV consortia in many states 
provide case management services, primary medical care, personal care, 
transportation services, nutritional services, and housing assistance."* The Title II 
program also funds HIV/AIDS drug assistance programs, with the number and scope 
of covered medications varying by state.^ The home and community-based care 
(H&CBC) programs funded by Title II can provide a range of services to eligible 
people with HIV. These Title II H&CBC programs, which are implemented in a number 
of states, fund a range of services, among those beneficial to people with HIV are: 
durable medical equipment, in-home diagnostic testing, comprehensive nurse case 
management, attendant care, day treatment services, personal care, and housing 
assistance.® The health insurance continuations programs funded by Title II cover 
health insurance premiums in all states offering this program and may also cover 
copayments, coinsurance, and/or deductibles.'^ 
The State Medicaid Programs 

Financial eligibility requirements for Medicaid vary from state to state, with 
eligibility potentially available to low-income elderly, blind, and disabled people, as well 
as to anyone receiving benefits from the Aid to Families with Dependent Children 
program.® As a result of a ruling by the Social Security Administration, people with a 

145 



diagnosis of AIDS are presumed to meet the disability standard.^ In July, 1993 the 
Social Security Administration published a listing of HIV-related conditions that can be 
used to establish presumptive disability for people infected with HIV but without a 
diagnosis of AIDSJ° 

The state Medicaid programs must cover and reimburse inpatient and 
outpatient hospital care, physician services, rural clinic services, laboratory services, 
and x-ray services for eligible recipients. In addition, the state Medicaid programs 
have the option to cover prescription medications, clinic services, diagnostic services, 
screening services, personal care, transportation to health care, and case 
management services.^ ^ A number of state Medicaid programs have developed 
innovative policies designed to provide the hospital care,^^ the home health and 
hospice care,^^ the nursing home care,^"* the physician services,^^ and 
prescription drugs^® needed by people with AIDS, as well as provide needed services 
with the Medicaid home and community-based care waiver programs. 
The Medicare Program 

In addition to the elderly, Medicare coverage is potentially available to the 
disabled if they meet certain work-related requirements. For a person with HIV to 
become eligible for Medicare requires meeting eligibility criteria for Social Security 
Disability Insurance (SSDI), including disability status (similar to Medicaid, people with 
AIDS have presumptive disability), sufficient work-related history, and a 29-month 
waiting period (5 months from disability status for SSDI payment to begin, then 24 
additional months for Medicare coverage to begin). ^® Although not a major payer of 
the care needed by people with AIDS, the Medicare program can be a source of 
funding for inpatient and outpatient hospital care, as well as physician services and 

146 



diagnostic, lab, and x-ray services for people who are eligible for benefits. However, 
the Medicare program does not cover and reimburse outpatient prescription drugs. 

Methodology 

Organizations Surveyed 

A list of organizational affiliates was obtained from the National Association of 
People with AIDS (NAPWA) to identify ASOs to include in the study. In identifying the 
ASOs to include in the survey, and to achieve a broadly-based study, the objective 
was to include at least one ASO from each state as well as one ASO from each of the 
56 EMAs (not including Puerto Rico) funded by Title I of the Ryan Write CARE Act 
during 1996. In a number of states the ASO from a Title I EM A was the only NAPWA- 
affiliated ASO in the state and was used to represent both the EMA and the state in 
the survey group. In more populated states, ASOs from EMAs and non-EMA areas 
were included in the survey group. (Many states do not have Title I EMAs.) 

The list of NAPWA organizational affiliates did not have ASOs for eight states. 
(These states all had small populations and were typically from the western or central 
regions of the United States.) In addition, the NAPWA list did not have ASOs for 14 
EMAs (typically these EMAs were regional areas or counties, not cities.) To try to 
include ASOs from these missing states and EMAs in the survey, telephone directories 
were used for the largest city in these states and EMAs to identify ASOs. A total of 87 
ASOs in 47 states and the District of Columbia were identified and included in the initial 
survey group. (ASOs could not be identified in North Dakota, Rhode Island and South 
Dakota.) The executive director or president of the ASO was typically identified as the 
person to receive the questionnaire. 



147 



Survey Questionnaire 

A five-page questionnaire was developed for the study using an open-ended 
format, focusing on the Medicaid programs, the Medicare program, and the programs 
funded by Titles I and II of the Ryan White CARE Act. For each of these four 
programs the questionnaire asked the executive director of the ASO "to list the health 
and care related services covered by" that program in their state "that are effective at 
meeting the needs of people with HIV illness." In addition, the questionnaire asked 
the ASO to "list any health and care-related services not covered by" that program in 
their state "that would be effective at meeting the needs of people with HIV illness." 
The questionnaire also asked the ASO to "mention any problems or difficulties that 
people with HIV illness have withf these programs in their state. 

The questionnaire presented a list of options to the ASO concerning any 
possible identification of the ASO in reports or publications resulting from the survey to 
assure the degree of anonymity that the organization preferred. The questionnaire 
concluded by asking the person completing the questionnaire to "describe your role in 
the organization." 
Survey Process 

In late February, 1997, the first mailing of the questionnaire was sent to the 87 
ASOs included in the survey group. Eight questionnaires were returned by the U.S. 
Postal Service as undeliverable, with no forwarding address. Directory assistance had 
no telephone listing for these ASOs in the cities listed in the old addresses. These 
eight ASOs were dropped from the survey group, reducing the group to 79 ASOs. In 
addition, two organizations responded to the survey that they were not involved with 
the health services and care needs of people with HIV illness, and hence, did not think 

148 



that they were qualified to respond. Also, two ASOs responded that they are 
understaffed and lacked the personnel to complete the survey. The final survey group 
contained 75 ASOs. Three additional mailings of the questionnaire were sent to ASOs 
at approximately six-week intervals, with the last mailing sent in early August, 1997. 
Survey Responses 

By September, 1997 30 ASOs (40 percent of the survey group) completed and 
returned questionnaire, providing data on these public programs in 24 states. Many of 
the ASOs participating in the study did not want their identity or state revealed. 
However, these 30 ASOs are ft^om all regions and geographic areas of the United 
States. Of these 30 ASOs, six people responding identified themselves as the 
executive director, four as case managers, two as director of public policy, two as 
director of client services, and two as staff members. Other people responding 
identified themselves as chief operating officer, chair, vice-president, board member, or 
coordinator. Nine people completing and returning questionnaires did not identify their 
role in the ASO. 

Survey Results - The Medicaid Program 
Effective Services Covered 

The questionnaire asked the ASOs to "list the health and care-related services 
covered by the Medicaid program in your state that are most effective at meeting the 
needs of people with HIV illness". Table 8-1 presents the 10 most frequently listed 
health and care-related services in the survey responses, with prescription drug 
coverage mentioned most frequently (by 24 ASOs). An ASO ft'om Utah responded 



149 



Taisle 8-1 : The Medicaid Program 
A.) Effective Health atxJ Care-Related Services for People with AIDS 

Rank 

1. prescription drugs/medications (24) 

2. primary care/primary physician (18) 

3. home care/home health aide/personal care aide/skilled nursing/attendant care/chore services (12) 

4. inpatient hospital care (11) 

5. lab services/diagnostic testing (6) 

6. dental care (6) 

7. hospice (4) 

7. eye care/eye exam/optical care (4) 

7. nursing home care (4) 

7. outpatient hospital care (4) 



B.) Effective Health and Care-Related Services for People with AIDS Not Covered 

1. dental care/dental services (8) 

2. mental health/pyscho-social care (5) 

2. restrictive/limited coverage of prescription drugs (5) 

4. assisted living facilities/residential care facilities/housing (3) 

4. restrictive/limited coverage of physician services (3) 

4. alternative treatments (acupuncture/massage therapy) (3) 

7. home health care/limited home health care (2) 

7. hospice (2) 

7. nutritional supplements (2) 



C. Problems with Medicaid Encountered by People with AIDS 

1. application process/length of application process/restrictive MedicakJ income eligibility guidelines (17) 

2. spend down paperwork/spend down levels (11) 

3. limited coverage of medications/prescription drugs (4) 

4. HMOs/managed care implementation (3) 

4. limited physician participation in Medicaid (3) 

4. Medicaid coverage taken away when SSDI approved, but Medicare coverage does not begin for 2 more 
years (3) 

7. many people with HIV (but not AIDS) not covered by Medicaid, delaying access to care (2) 



Note: the number in parentheses following each health or care-related sen/ice is the number of ASOs 
mentioning the service. 



150 



that the "Utah Medicaid [program] has a long history of providing reimbursement for 
quality HIV care. ... Medicaid has worked hard to talk with major HIV providers to 
establish and maintain treatment." Similarly, an ASO in Mississippi reported that 
"Medicaid is the best coverage for low income persons without health insurance in 
Mississippi, although [Medicaid coverage] is limited." 

Other effective covered services that were mentioned in survey responses from 
the ASOs (with the frequency following each service in parenthesis) are: 
transportation to care/ambulance (3); case management (2); durable medical 
equipment (2); health insurance continuation (2); home and community-based care 
waiver programs (2); speech/hearing/physical therapy (2); substance abuse services 
(2); home-delivered meals (1); limited mental health (1); and nutrition supplements (1). 
Effective Services Not Covered 

The questionnaire asked the ASOs to "list any health and care-related services 
that the Medicaid program in your state does NOT cover that would be effective at 
meeting the needs of people with HIV illness". As Table 8-1 illustrates, dental care 
was the most frequently mentioned effective service that was not covered by the state 
Medicaid programs (mentioned by 8 ASOs). 

A number of ASOs mentioned restrictive coverage of prescription drugs and 
physician services in response to this question. Federal Medicaid policy allows the 
states to establish utilization limits on the number of physician visits^^ and 
prescription drugs^ that Medicaid recipients may receive. An ASO in Texas 
responded that Medicaid coverage of prescription drugs in Texas as of August, 1997 
was "far too restrictive (3 per month per recipient) to provide people with HIV/AIDS 
with the medications they need. ([However, this is] changing as the Texas Medicaid 

151 



I, 
I 




program reorganizes its drug programs to provide unlimited prescriptions for Medicaid 
recipients.) Because of this [limit on prescriptions], many clients in this service area 
get health care from more than one source, resulting in fragmented, sometimes 
duplicated, and inadequately supervised care." An ASO from South Carolina replied 
that Medicaid coverage of prescription drugs is limited to 3 prescriptions per month in 
that state. 'Those on the HIV/AIDS [home and community-based care] waiver 
program qualify for 5 prescriptions [per month], but these [people] are more and more 
those at the end stage when treatments are less effective." The ASOs mentioning this 
restrictive coverage point out that although these services may be covered by 
Medicaid, the utilization limits imposed by a number of states can be below the level of 
care needed by people with HIV illness. 

Other effective services not covered by Medicaid that were mentioned by only 
one ASO in the survey process are: assistance with activities for daily living; early 
intervention services; eye care; food; limited lab services; limited hospital care; and 
transportation to health care. An ASO from Nebraska responded that the Nebraska 
Medicaid program does not provide transportation to or from medical appointments, 
creating "severe problems for disabled [Medicaid recipients] who cannot access 
infectious disease specialists due to great distances." Aloysius Home, as ASO in 
Tennessee replied that there is "no reimbursement for supportive or assisted living 
facilities such as Aloysius Home. Research from other parts of the country has shown 
that programs such as ours decrease the number and length of hospitalizations for 
persons with HIV illness." 

All of these effective services not covered by Medicaid, as well as the effective 
services not covered by Medicaid that are listed in Table 8-1 , can be provided to 

152 



I 



Medicaid recipients with AIDS through the Medicaid home and community-based care 
waiver programs.^^ Expanded use of these waiver programs will allow the state 
Medicaid programs to broaden coverage of the health and care-related services to 
meet the care needs of people with AIDS. 

In addition, one ASO responded to this question that there is no Medicaid 
coverage for people with HIV (without AIDS) who do not meet other eligibility criteria. 
Unlike AIDS, merely being infected with HIV does not confer presumptive disability for 
Medicaid eligibility. Unfortunately, unless eligible through some other category (for 
example, Aid to Families with Dependent Children) people infected with HIV (without a 
diagnosis of AIDS) are not eligible for Medicaid. Without Medicaid, or some other type 
of coverage, it will be difficult for people with HIV to gain access to the combination 
drug therapies that are effective at combatting the progression of HIV disease. 
Problems with Medicaid 

The questionnaire asked the ASOs to "mention any problems or difficulties that 
people with HIV illness have with the Medicaid program in your state". As Table 8-1 
presents, by far, the eligibility process was the most frequently mentioned problems 
that people with HIV illness encounter with the Medicaid program. The complexity of 
the Medicaid application process, the length of this process, and restrictive income 
eligibility guidelines were mentioned most frequently by the ASOs as a problem people 
with HIV illness have with Medicaid. 

Another Medicaid problem for people with HIV illness is the eligibility issue of 
"spend down," as Table 8-1 documents. Many state Medicaid programs cover the 
optional medically needy category of Medicaid recipients. The medically needy meet 
certain eligibility guidelines for Medicaid coverage, yet have financial assets and 

153 



income in excess of Medicaid limits. State Medicaid programs offering medically 
needy coverage allow these people to deduct the costs of their health care from their 
incomes and assets to "spend down" to Medicaid eligibility. Eleven ASOs noted that 
the paperwork required for the administration of the spend down process is a problem 
for people with HIV illness and that the spend down levels can be burdensome. 

One ASO provided a detailed explanation of the spend down problem. In that 
state the cut off income level for Medicaid eligibility is $755 per month. "A client 
earning that amount or less is entitled to Medicaid. However, if one earns $756 per 
month, he must spend down to $418 on medical expenses each month, and show 
proof of same, prior to being eligible for Medicaid. Not only is this unfair, $1 more 
[income] costs a client over $300 more each month, but the tracking of eligibility 
leaves room for 'computer errors' where the computer still says the client is not eligible 
even though he has met his spend down [requirements] causing difficulty getting 
medications and/or services." 

An ASO in Wyoming responded that Medicaid coverage is offered to some 
people with AIDS at the beginning of the eligibility process for Social Security disability 
coverage. However, when a person is determined eligible for Social Security Disability 
Insurance, the higher income results in the loss of Medicaid coverage. These people 
have no health coverage for two years until Medicare coverage begins. Hence, 
Medicaid coverage "is denied at a time when many people could most use it." 

Three ASOs mentioned the problems that Medicaid recipients with HIV illness 
have with managed care or health maintenance organizations (HMOs). For example, 
an ASO in Utah replied that Medicaid coverage is "in some instance better than 
HMO/AIDS care." In addition, an ASO from Florida reported that the "Medicaid HMO 

154 



li 

makes it difficult for people living with HIV to see the specialists who manage their 
care. Most primary care providers are not knowledgeable about HIV/AIDS care and 
still do not provide referrals for patients [with HIV] easily." 

Other problems or difficulties that people with HIV illness have with Medicaid 
that were mentioned by only one ASO in the survey process are: administrative 
problems with health insurance continuation; authorization of payments for 
medications; confidentiality; implications of new insurance "portability" law are unclear; 
limited home health care; limited lab tests; limited coverage of oxygen services; limited 
nursing home beds covered; many patients must seek services at two or more sites 
for needed care, resulting in fragmented and uncoordinated care; Medicaid cutbacks 
have unclear implications for people with AIDS; and the waiting time to receive home 
and community-based care waiver services due to inadequate funding and staffing. 

Survey Results: Title II of the Ryan White CARE Act 
Effective Services Covered 

The questionnaire asked the ASOs to list the health and care-related services 
covered by programs funded by Title II of the Ryan White CARE Act that are effective 
at meeting the care needs of people with HIV illness. Table 8-2 presents the mostly 
frequently mentioned health and care-related services, with prescription drug coverage 
mentioned most frequently (by 17 ASOs). Interestingly, food and nutrition (mentioned 
by 13 ASOs), alternative therapies (4 ASOs), and legal services (4 ASOs) are effective 
care or services covered by programs funded by Title II of the CARE Act that are not 
covered by the traditional state Medicaid programs but may be covered by the 
Medicaid home and community-based care waiver programs.^ 

155 



Table 8-2: Title II of the Ryan White CARE Act 



A.) Effective Health and Care-Related Services for People with AIDS 

Rank 

1 . prescription drugs/medications (1 7) 

2. prinfiary care/clinical services (14) 

3. food and nutrition (13) 

4. case management (9) 

5. mental health/counseling/support groups (8) 

6. dental care (7) 

7. transportation services (6) 

8. alternative therapies (acupuncture/herbal or massage therapy (4) 

8. legal services (4) 

9. health insurance continuation (3) 
9. home health services (3) 

B.) Effective Health and Care-Related Services for People with AIDS Not Covered 

1 . alternative therapies (5) 

1. mental health/pyscho-social services/support groups (5) 

3. limited drug formulary/psychiatric drugs/more funding for drugs (4) 

3. limited utilization of services/limited funding (4) 

5. assisted living facilities/housing (2) 

5. inpatient care (2) 



C. Problems with Title II Encountered by People with AIDS 

1. limited funding for Title II programs (11) 

2. lack of awareness of Title II programs/services (4) 

3. access to services (2) 
3. bills paid slowly (2) 

3. lack of a good process for inputs into the allocation of funds for programs/services and for planning (2) 

3. people with health insurance cannot use Title II services (2) 



Note: the number in parentheses following each health or care-related service is the number of ASOs 
mentioning the service. 



156 



Other effective covered services mentioned in the survey responses from the 
ASOs (with the frequency following each service in parenthesis) are: benefits 
advocacy (2); financial assistance (2); social services (2); day care (adult and child) 
(2); durable medical equipment (2); emergency housing (2); hospice (2); respite care 
(2); substance abuse services (2); early intervention services (1); foster care/adoption 
(1); HIV counseling/testing (1); hepatitis B counseling/testing/vaccine (1); home 
infusion (1); outreach programs (1); rehabilitation therapy (1); respiratory treatment (1); 
and TB counseling and testing. 
Effective Services Not Covered 

The questionnaire asked for a listing of any health or care-related services that 
programs funded by Title II of the CARE Act do not cover that would be effective at 
meeting the needs of people with HIV illness. The responses from the ASOs are 
presented in Table 8-2, with alternative therapies the most frequently mentioned 
beneficial health service not covered by programs funded by Title II of the CARE Act. 
This illustrates that the health and care-related services covered by Title II programs 
vary from state to state, as four other ASOs from other states listed alternative 
therapies among the most effective health services covered by the Title II program in 
their states. 

Other effective services not covered by Title II programs that were mentioned by 
only one ASO in the survey process are: education/training support groups; eye 
care; food; HIV prevention programs; health insurance continuation for people with 
HIV (not AIDS); hospice; limited case management and coordination of services; 
limited financial assistance; limited transportation services; local consortia set priorities 
- services vary widely among consortia across the state; no centralized statewide drug 

157 



assistance program; ongoing assistance; only case management funded - any other 
Title ii program would be beneficial; and substance abuse services. 

One ASO responded to this survey question that the programs funded by Title II 
of the CARE Act need to address the concerns of people who may recover from HIV- 
related disability with jobs programs and re-education programs. Given the success of 
the combination drug therapies in combatting the progression of HIV disease in many 
people,^^ the needs of people who recover from HIV-related disability could become 
an increasingly common problem. Not only will they need job and education 
programs as the ASO pointed out, but will they lose eligibility for Medicaid, Medicare, 
or the Ryan White programs? If people who recover from HIV-related disability lose 
eligibility for Medicaid or the drug assistance programs funded by Title II of the CARE 
Act, they may not be able to continue the combination drug therapies that allowed 
their recovery. 

Problems with the Title 11 Programs 

The questionnaire asked the people at the ASOs to mention any problems or 
difficulties that people with HIV illness have with the Title program in their state. As 
Table 8-2 illustrates, limited funding for Title II programs was by far the most frequently 
mentioned problem (11 ASOs). An ASO in South Carolina replied that the limitations 
on funding "restrict care from standards often suggested." Another ASO responded 
that "as a low incidence [of AIDS] state, our funds are very limited - we cannot meet 
the needs of everyone who is eligible." An ASO from Iowa reported that a major 
problem people with HIV illness have with the Title II program is "being denied 
payment because the client is over the $500 limit per quarter or because the client is 
trying to get payment for a drug not on the formulary (for example, psychiatric 

158 



medications)." An ASO from Mississippi answered that "now only the triple drug 
combination is furnished to as many people as the money will cover." A Wyoming 
ASO concluded that "in a lot of cases it would be better to have more [funds] for 
medical care as the prescription drug portion can be eaten up in one month." 

Another ASO replied "we need federal funds for housing, food, and food for the 
needy. AIDS/HIV victims need help with medications and health care. We do not 
have any funds. It is much needed to have a designated area apartment with special 
attention to HIV victims. A total health care program is needed. Please help." 

A lack of awareness of Title ii programs and services was the second most 
frequently mentioned problem (4 ASOs). An ASO in Alabama replied that it is difficult 
for individuals living with HIV to access Title II services because of a lack of awareness 
of the programs. "HIV infected individuals need to know where, when, and how these 
services can be utilized." Given the benefits of the drug assistance programs and the 
other services funded by Title II of the CARE Act, lack of awareness of these programs 
by people with HIV illness is a problem that needs to be addressed. 

Other problems with Title II programs that were mentioned by only one ASO in 
the survey process are: accessibility of services; burnout for people involved with HIV 
services; fragmented care - too many agencies/different eligibility criteria; immigrants 
have access problems; limited choice of physicians/medical practices; limited 
coverage encourages funding "deserving" patients; limited drug formulary; no inpatient 
coverage; must be a client and get award through an ASO; privacy concerns/fears; 
timeliness of awards; and transportation problems. 



159 



Survey Results: Title I of the Ryan White CARE Act 
Effective Services Covered 

Table 8-3 presents the health and care-related services funded by Title I of the 
Ryan White CARE Act that the ASOs identified as most effective at meeting the needs 
of people with HIV illness. The effective services listed in Table 8-3 are a blend of both 
health care and social services. Most of the beneficial social services listed in Table 8- 
3 are not available from the traditional state Medicaid programs but can be provided to 
eligible people with AIDS through the Medicaid home and community-based care 
waiver programs. 

Other effective services covered by Title I programs that were mentioned by 
only one ASO in the survey process are: attendant care; early intervention skills 
building (living with HIV); residential care facility; and substance abuse treatment. In 
addition, one ASO responded that the Title I program covers health care for people 
not eligible for Medicaid or other public programs. 
Effective Services Not Covered 

The questionnaire asked for a listing of any health or care-related services that 
programs funded by Title I of the CARE Act do not cover that would be effective at 
meeting the needs of people with HIV illness. As no health or care-related service was 
mentioned more than once, the responses from the ASOs are not listed in Table 8-3. 
Instead, the responses are presented in the text. Effective services not covered by 
Title I programs that were mentioned by only one ASO in the survey process are: 
child care; emotional and practical support; insurance continuation for people with HIV 
(without a diagnosis of AIDS); legal services; limited mental health funding; and most 
medical needs not met with Title I funding are covered by Title II programs. In addition, 

160 



Table 8-3: Title I of the Ryan White CARE Act 
Effective Health and Care-Related Sen/ices for People with AIDS 

Rank 

1. food and nutrition (4) 

1. social services, continuum of care/community services referral/tsenefits counseling (4) 

3. case nnanagement (3) 

3. prescription drugs/medications (3) 

3. primary care (3) 

6. dental care (2) 

6. emergency assistance/financial assistance (2) 

6. housing (2) 

6. mental health services (2) 

6. transportation services (2) 



Note: the number in parentheses following each health or care-related service is the number of ASOs 
mentioning the service. 



161 



an ASO responded that the Title I program in its services area does not cover support 
services for family and friends. This ASO added "often we encounter family that feels 
'left out' because services embrace the HIV infected person but not the [other] 
affected person." 

Problems with the Title I Programs 

The questionnaire asked the ASOs to mention any problems that people with 
HIV have with the Title i program in their service area. As no problem was mentioned 
more than once, the responses from the ASOs are not listed in Table 8-3. 
The problems with Title I that were mentioned only once in the survey process are: 
different level of services offered to people with HIV compared to the level of services 
offered to people with AIDS; difficult to access funding; inefficient system - "i.e., pay 
more for case manager to get drugs for a client than the drugs are worth"; inequities 
in coverage of clients by state in a bi-state EMA; large county - difficult to provide 
services where patients/clients live; not enough funding; Title I planning council is 
cumbersome; and understanding and complying with eligibility rules/documentation. 
In addition, an ASO reported that "the most common problem [in their service area] is 
the transportation issue. Transit systems are limiting in this city and generally, a 
person living on disability (eligible for services) can not afford a vehicle, the insurance, 
maintenance, and cost of petrol. Therefore, services are not attended. " 

Survey Results - The Medicare Program 
Effective Services Covered 

The questionnaire asked the ASOs to "list the health and care-related services 
covered by the Medicare program that are most effective at meeting the needs of 
people with HIV illness". Table 8-4 presents all the responses from the ASOs, with 

162 



Table 8-4: The Medicare Program 
A.) Effective Healtfi and Care-Related Services for People with AIDS 

Rank 

1. priniary care/primary physician (17) 

2. inpatient hospital care (16) 

3. outpatient hospital services (9) 

4. lab services/diagnostic testing (7) 

5. home health care (4) 

6. durable medical equipment (2) 
6. hospice (2) 

6. medical supplies (2) 

9. flu/pneumonia shots (1) 

9. skilled nursing home care (1) 

B.) Effective Health and Care-Related Services for People with AIDS Not Covered 

1. prescription drugs (17) 

2. dental services (2) 
2. transportation (2) 

4. assisted living facilities (1) 

4. eye exams (1) 

4. I.V. medications at home (1) 

4. physician participation (1) 

4. psycho-social services (1) 



C. Problems with Medicare Encountered by People with AIDS 

1. prescription drugs not covered (6) 

2. eligibility process/length of time for eligibility (5) 

3. complexity of Medicare coverage of services (3) 

3. cost sharing requirements for Medicare patient is more than many can pay (3) 

5. slow and low payments to providers cause reluctance to participate (2) 

6. access to services (1) 

6. difTicult/cumbersome for Medicare patients to use Medicaid spend down to qualify for Medicaid coverage 

of prescription drugs (1) 
6. difficult for people with HIV (without AIDS) to qualify for Medicare (1) 

6. HMOs (most comprehensive Medicare-covered care available) typically unwilling to accept people with 
AIDS (1) 

6. lack of support services covered (Medicare is a medical program) (1) 

6. Medicare criteria for home-based services are strict - few HIV patients meet these criteria (1) 

6. Medicare (Part B) premiums cost more than most can afford (1 ) 

6. private Medicare insurance supplements (Medigap policies) provide inadequate prescription drug 
coverage and are expensive (1) 



Note: the number in parentheses following each health or care-related service is the number of ASOs 
mentioning the service. 



163 



physician services and inpatient hospital care the two most frequently mentioned 
services covered by Medicare that are most effective at meeting the care needs of 
people with HIV illness. 
Effective Services Not Covered 

The questionnaire asked the ASOs to "list any health and care-related services 
that the Medicare program does not offer that would be effective at meeting the needs 
of people with HIV illness". As Table 8-4 documents, the ASOs overwhelmingly 
responded (17 ASOs) that prescription drug coverage was a health service needed by 
people with HIV illness that the Medicare program does not cover. One ASO 
responded that if Medicare was "the only health insurance a disabled person has, lack 
of access to medications is a significant problem." Noting that Medicare does not 
cover prescription drugs, an ASO in Tennessee replied that people on Medicare use 
Medicaid spend down to qualify for Medicaid coverage of prescription drugs. 
However, "spend down is a problem for people with limited incomes and it is very 
cumbersome." Given the effectiveness of the combination drug therapies in 
combatting the progression of HIV disease, the lack of Medicare reimbursement of 
prescription drugs is a major weakness in Medicare coverage for people with HIV 
illness. 

Problems with Medicare 

The questionnaire the ASOs to "mention any problems or difficulties that people 
with HIV illness" have with the Medicare program. Table 8-4 presents all the 
responses from the ASOs. Again, the lack of prescription drug coverage by Medicare 
was the most frequently mentioned response. The eligibility process and the length of 
time for eligibility was the second most frequently mentioned problem. For a person 

164 



with HIV to become eligible for Medicare requires meeting eligibility criteria for Social 
Security Disability Insurance, including disability status (similar to Medicaid, people with 
AIDS have presumptive disability), sufficient work-related history, and a 29-month 
waitingperiod (5 months from disability status for Social Security Disability Insurance 
payment to begin, then 24 additional months for Medicare coverage to begin).^ In 
addition, an ASO in Alabama replied that "just because an individual is HIV positive 
does not mean that they qualify for Medicare benefits. A HIV infected individual must 
have a recognized, AIDS-defining illness to [meet the] disability classification." An 
Iowa ASO reported that "many of our clients do not understand how Medicare works 
(what is covered and what is not) and often confuse Medicaid and Medicare. Also, 
some of our clients do not qualify [for Medicare] because they have not been 
determined disabled or have not been on SSDI for 24 months." 

A local government ASO replied that people with HIV illness in their service area 
have problems with the Medicare program because "Medicare is a medical program. 
Therefore, supportive services required by a person with HIV need to be funded by 
other sources." An ASO in Florida, however, noted that people with HIV illness can 
have problems receiving Medicare coverage of medical care services. This Florida 
ASO reported that "the [Medicare] criteria for home-based services such as nursing 
and personal care is very strict. The only way that someone can be covered for these 
services is if they were just released from a hospital after surgery or are bed bound. 
Few of the HIV patients are able to be covered due to" these strict Medicare criteria. 

Medicare cost sharing requirements were also mentioned by three ASOs as a 
problem that people with HIV confront. For example, a Medicare patient is required to 
pay a $100 deductible for physician services, as well as 20 percent cost sharing on 

165 



physician bills after the deductible requirement has been met. An ASO in Nebraska 
noted that "20 percent is more than most can pay and Medicare [Part B] premiums 
are more than most can afford." 

Summary and Conclusion 

Public programs are the primary payers for the health and care-related services 
provided to people with HIV. The coverage, payment, and utilization policies 
implemented by these public programs affect the care that people with HIV receive. 
ASOs were surveyed to identify effective services covered, and effective services that 
are not covered, by these public payers of HIV-related care, as well as identify 
problems that people with HIV illness have with these programs. 

As Table 8-1 illustrates, the state Medicaid programs cover a range of health 
services that meet the needs of people with HIV, with prescription drug coverage 
mentioned most frequently by the ASOs. However, a number of states place 
restrictive utilization limits on these health services (for example, three prescriptions 
per month), often below the levels needed by people with HIV illness. Table 8-1 also 
presents effective health and care-related services that the state Medicaid programs 
do not cover. All of these services can be provided with the Medicaid home and 
community-based care waiver programs for people with AIDS/HIV and for the elderly 
and disabled (people with AIDS can access this programs due to their disability 
status).^ Expanded use of these waiver programs would allow the state Medicaid 
programs to target effective health and care-related services to people with HIV illness. 
In addition, due to more generous income eligibility standards, it is easier for people 
with HIV to qualify for these waiver services than for traditional Medicaid coverage.^ 



166 



Table 8-2 presents effective health and care-related services provided to people 
with HIV that are funded by Title II of the Ryan White CARE Act. In addition to 
prescription drugs and physician services, the Title II programs offer support-related 
services such as food and nutrition, transportation, alternative therapies, mental health 
and support groups, adult and child day care, and legal services. Limited funding for 
Title II programs was the problem most frequently identified by the ASOs. A number 
of ASOs mentioned a lack of awareness of Title II programs as a problem for people 
with HIV illness. 

As Table 8-3 summarizes, the ASOs identified a blend of both health care and 
social services funded by Title I of the Ryan White CARE Act as most effective at 
meeting the needs of people with HIV illness. One ASO responded that the Title I 
program in its service area does not cover support services for family and friends of 
people with HIV disease, with these people feeling "left out." Another ASO reported 
the lack of transportation to care results in the loss of care. 

As Table 8-4 presents, the Medicare program covers a range of health services 
necessary for the treatment of acute illness, except for prescription drugs. Given the 
success of the combination drug therapies in combatting the progression of HIV 
disease, the ASOs identified the lack of Medicare coverage of prescription drugs as a 
major problem for people with HIV illness. One ASO responded that if Medicare was 
"the only health insurance a disabled person has, lack of access to medications is a 
significant problem." Another ASO noted that given the focus of Medicare coverage 
on acute care/medical care, the lack of Medicare coverage of support services is a 
problem for people with HIV disease. The length of time for Medicare eligibility (29 

167 



months) is a severe problem for people with HIV illness. Medicare cost sharing 
responsibilities can be more than most people with AIDS can afford. 

One ASO responded that the Title II programs need to address the concerns of 
people who may recover from HIV-related disability with job and re-education 
programs. Given the success of the combination drug therapies in combatting the 
progression of HIV disease, all public programs covering HIV-related care, not just the 
CARE Act programs, will need to address the health and care-related needs of people 
who recover from HIV-related disability. If people recover from HIV-related disability, 
will they lose their disability status? This disability status, for example, is a key element 
of eligibility for Medicaid coverage. Without this coverage, will they still have access to 
the combination drug therapies and other health and care-related services that led to 
their recovery? The eligibility of people who recover from HIV-related disability for 
public programs will become an increasingly important issue in the near future as new 
developments in drug therapies and other treatments combat the progression of HIV 
disease. 

Acknowledgements: The authors thank the executive directors of the AIDS service 
organizations and the people on their staffs who took the time to answer the 
questionnaires that collected the data necessary for this research. Without their 
cooperation this study would not have been possible. This research was funded by 
the Health Care Financing Administration, U.S. Department of Health and Human 
Services (grant #18-P-90286/5-02). The views expressed in this paper are those of 
the authors. No endorsement by the Health Care Financing Administration is intended 
or should be inferred. 

168 



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171 



Chapter 9 
Compliance with TB Drug Regimens: 
Incentives and Enablers Offered by Public Health Departments'* 

Introduction 

From 1952 to 1985 the annual incidence of tuberculosis (TB) in the United 
States fell from 56 cases to 9 cases per 100,00 population, or about a 5 percent 
decrease per year J The consistent annual decline of the incidence of TB in the 
United States ended in the mid-1980s, increasing from 9.1 TB cases per 100,000 
population in 1988 to 10.5 cases per 100,000 population in 1992.^ This trend in the 
United States of the increasing incidence of TB was reversed in 1993, with the annual 
incidence of TB falling to 9.8 cases per 100,000 population in 1993, to 9.4 cases per 
100,000 population in 1994, and 8.7 cases per 100,000 population in 1995.^ The 
resurgence of TB in the late 1980s and early 1990s, however, underscores the 
importance of developing and implementing effective approaches to control and treat 
this communicable disease. The purpose of this research is to present the incentives 
and enablers implemented by state and local health departments in each of the 50 
states and the District of Columbia to encourage TB patients to comply with TB drug 
regimens. 

Methodology 

To identify these incentives and enablers, a questionnaire was mailed to the 
directors of the state health departments in each state and the District of Columbia 
during May, 1995. (In almost all cases, the questionnaires were completed and 



^his research is published in the AMERICAN JOURNAL OF PUBLIC HEALTH, 
Vol. 87, No. 12, 1997. 

172 



returned by administrators of tlie states' TB control programs.) By August, 1995 ail 50 
states and the District of Columbia returned completed questionnaires. The 
questionnaire provided the following list of incentives and enablers, with a request to 
circle any that apply: free meals; free clothing; free transportation to treatment; cash 
(if yes, how much money); and "other effective incentives (please describe)." Tables 
summarizing the results of the survey were mailed to the health departments for 
verifications and updates in October, 1995. 

Treatment Incentives and Enablers 

An ad hoc committee of the Scientific Assembly on Microbiology Tuberculosis 
and Pulmonary Infections suggests that the use of incentives and enablers can help 
encourage TB patients to comply with TB drug regimens.^ Among the incentives 
identified as successful are food and clothing, with bus tokens and baby-sitting 
services mentioned as enablers. Food coupons and cash have also been suggested 
as incentives to encourage compliance with drug regimens.^ ® The survey of the 
directors of the state health departments asked if state or local health departments 
offered TB patients incentives to comply with TB drug regimens. 

As Table 9-1 illustrates, public health departments in most states offered free 
meals, free clothing, and free transportation to treatment as incentives or enablers to 
encourage TB patients to comply with TB drug regimens. Most states reported that 
public health departments in their states did not provide free baby-sitting or day care 
nor did they provide cash payments to encourage compliance with drug regimens. 
Among other incentives mentioned by the state health departments as effective were: 
housing and gas vouchers; grocery store vouchers; housing for homeless TB patients; 
patient advocacy and assistance with social services; personal items and toiletries; 

173 



Table 9-1 

Incentives to TB Patients to Comply with TB Drug Reginrtens 
(1995) 





Do State or Local Health Departments in Your State Use ttte Following Incentives to Encourage TB Patients to Comply with TB Drug Regimens: 


Free 
Meals? 


Free 
Clothing? 


Free Transportation 
to Treatment? 


Free Bat>y-sitting 
or Day Care? 


Cash (and the 
anwunt provided)? 


Other Effective 
Incentives? 


Alabama 


yes 

(The American Lun 


yes 

□ Association provic 


yes 

to an incentive fund to 


yes 

ttie state-operated Tub* 


yes (amount varies) 
wcukisis Control Prograr 


none mentioned 
n which pays for these incentives.) 


Alaska 


yes 


yes 


yes 


rto answer 


no 


housing and gas 
vouchers 


Arizona 


yes 


yes 


yes 


no arfswer 


no answer 


groceries, food coupons, 
hygiene packets 


Aricansas 


no 


no 


yes-if needed 


no 


yes ($2.50) 


tender k>ving care' 


California 


yes 


Local health d< 


apartments may offer th 


ese incentives; it may v 


ary with jurisdwtion. 




Colorado 


no 


no 


no 


no 


no answer 


none mentnned 


Connecticut 


yes 


yes 


yes 


no 


yes (less than $5) 


yes 


Delaware 


yes 


no 


no 


no 


no 


temporary housing 


District of 
Columbia 


yes 


no 


yes 


no 


no 


rtone mentioned 


Florida 


yes (food couports & 
nutrition supplements] 


no 


yes (bus tokens) 


no 


yes (amount varies) 
in a few areas 


grocery store 
vouchers 


Georgia 


yes 


yes 


yes 


no 


no 


no 


Hawaii 


no 


no 


yes 


no 


no 


social services support 


Idaho 


yes 


no 


no 


no 


no 


no 


Illinois 


yes 


yes 


yes 


no 


no 


none mentiorted 


Indiana 


yes 


yes 


yes 


no 


r>o 


norte nrtentioned 


Iowa 


yes 


rto 


yes 


no 


no 


no 


Kansas 




Clncen 


ives are offered on a k> 


cal basis; not able to an 


svwr on a statewide leve 




Kentucky 


yes 


yes 


yes 


no 


no 


housing for homeless TB patients 
and patient advocacy & assis- 
tance accessing social services 


Louisiana 


yes 


yes 


yes 


no 


yes (varies by site) 


otfter incentives may be 
utilized to motivate patients 


Maine 


yes 


yes 


yes 


yes 

HI select, high risk patie 


yes ($150 maximum)* 
nts.") 


none mentiorted 


Maryland 


yes 1 yes 1 yes 
("particularly in the larger jurisdictions') 


no 


rto 


no 


Massachusetts 


yes 


yes 


yes 


no 


yes (varies with cKent 
needs and 
patient contract) 


litcentive program is designed 
artd taikxed to meet wttatever can 

be kientified as the patient's 
greatest need. It is indivklualized 
aitd many.many different types 
of incentives are possible.* 


Michigan 


yes 


yes 


yes 


no 


yes (amount varies) 


personal items, such as 
soap, etc. 


Minnesota 


yes 


no 


yes 


no 


yes ($1 for screening at 
homeless shelters) 


"Some incentives offered on a 
k>cal basis; not able to ansvwr 
on a statewkle level.' 


Mississippi 


yes (as needed) 


yes (as needed) 


yes 


no 


yes - for transportatmn/ 
fuel costs ($.10 per mile 


May pay sonteorte to bring 
patient to dink: - depends on 
distance & available transportatkxi 


^Assouri 


yes 


yes 


yes 


no 


rto 


norte mentioned 



174 



Table 9-1 

Incentives to TB Patients to Comply with TB Drug Regimens 
(1995) 





Do State or Local Health Departments in Your State Use the Following Incentives to Encourage TB Patients to Comply with TB Drug Regimens: 


Free 
Meals? 


Free 
Clothing? 


Free Transportation 
to Treatment? 


Free Baby-sitting 
or Day Care? 


Cash (and the 
amount (Hovided)? 


Other Effective 
Incentives? 


Montana 


yes (as needed) 
(••"County healt 


yes (as needed) 
1 departments use s 


yes (as needed) 
1 variety of incentives/er 
throughout the course 


unknown 
lablers that are taik>red 
of therapy (books, food 


no 

to fit the needs of the pa 
, support groups.*) 


yes" 

ient; many times these change 


Nebraska 


yes (at times) 


rK> 


yes 


no 


Ito 


none mentioned 


Nevada 


yes 

(•••"Food, coffee, frui 


no 

t, and cocKioms are 


yes 

available in the TB din 
assisted with re 


no 

c waiting room in Las V 
sklentlal care if they ar« 


no 

egas. Patients also are 
) homeless.* 


yes*~ 


New Hampshir 


yes 


no 


rto 


ito 


no 


none ntentioned 


New Jersey 


yBs~ 


yes- 


yes- 
-varies in each dir 


no 

k: 


no 


food vouchers, food 
supplenrtents (Sustecal)~ 


NoW IVIaXICO 


no 


no 


no 


no 


no 


no 


New York 


yes 


yes 


yes 


no ansvwr 


no 


indivkJualized needs kJentified 
for the patient 


North Carolina 


yos 


yes 


yes 


yes 


yes - usually enough 
for a meal or a cab 


IndivkJualized, per patient 
need* 


North Dakota 


yes 


no 


yes 


uncertain 


no 


toys or treats for chiMren 


Ohio 


yes 


yes 


yes 


yes 


yes - $40 per month 


iitdivklualized needs kientiried 
for the patient 


Oklahoma 


no 


no 


yes 


no 


no 


"Threat of court-ordered 
confinentent if non-compliant with 
treatment (active cases only).* 




yes 


yes 


yes 


yes 


yes $10 to $20 per wee 


Tickets to sporting events, diaper 
servwe, sports equipment, vouchers 
for fast food, bus passes, etc. 


r Ol II loyi Val lla 


yes 


yes 


yes 


yes 


no 


*We try to provkle whatever it 
tak^s to assure patient 
compliance with therapy.* 


Rhode Island 


yes 

~Thi 


yes 

s is used as a last r 


yes 

ssort, but it does work f 


no 

or the most recak;itrant 


yes - $5 per dose — 
patients. 


'Almost anything you 
can imagine.* 






yes 


yes 


yes 


es - tt varies, depertdin 
on the purpose 


"Whatever it taices to 
motivate the patient.* 


omjlll LMtKUVa 


no 


no 


no 


no 


no 


no 




yes 


yes 


yes 


no 


no 


*Everything from birthday cards 
to car tiatteries.* 


Texas 


rto ansvwr 


noansvrar 


yes 


no answer 


no answer 


rent assistance, ntednal 
equipment (oxygen concentrator) 


1 Hah 

Ulan 


yes 


yes 


yes 


no 


yes-$10 per week 


aluminum cans, housing, t>us 
tokens/passes, cktthing, 
and sleeping bags 


Vermont 


not available 


not available 


not available 


not available 


not availal>le 


not available 


Virginia 


yes 


yes 


yes 


no 


no 


"Housing in exchange for 
compliance VMth DOT for 
homeless TB patients.* 


Washington 




yes 


yes 


no 


no 


"Things for chiklren of patients.* 


West Virginia 


no 


rto 


no 


no 


no 


no 


Wisconsin 


no 


yes (only in 
Milwaukee) 
■"County health dep; 

th< 


yes 

artments use a variety o 
)se incentives/enablers 


Ito 

if incentives/enablers th 
may change throughoul 


no 

at are taik>red to fit the n< 
the course of therapy.* 


Individual patient need 

aeds of the patient; 


Wyoming 


no 


no 


no 


no 


no 


no 


Source: a 1995 survey of the state health departments. 

This research vras funded by a grant from the Health Care Rnandng Administration, U.S. Department of Health and Human Services. 



175 



toys or treats for children; tickets for sporting events; diaper services; medical 
equipment; and "everything from birthday cards to batteries." A number of states 
responded that their public health departments used a variety of incentives and 
enablers designed to meet the individual needs of TB patients to encourage 
compliance with drug therapies. As the Department of Public Health in Massachusetts 
replied, the incentive program is "designed and tailored to meet whatever can be 
identified as the patients' greatest need. It is individualized and many, many different 
types of incentives are possible." 

Summary and Conclusions 
The results of the survey conducted for this study indicate that public health 
departments in almost all states are implementing the incentives and enablers that TB 
experts advocate to encourage patients to comply with drug regimens in efforts to 
control this disease. The implementation of these TB incentives, along with public 
health screening and treatment programs combined with dramatically increased federal 
funding for TB control during federal fiscal year 1993, may help to explain why the 
incidence of TB resumed its long term decline in the United States in 1993 after a 
decade of resurgence. The resurgence of TB during the 1980s is attributable, at least 
in part, to inadequate public funding for TB control by the federal, state, and local 
governments.'^ In 1981 Congress created a categorical grant program to state and 
local governments for TB control with section 317 of the Public Health Service Act.® 
However, this grant program was not funded at authorized levels until 1992. For 
example, the program was authorized at $9,000,000 in federal fiscal year 1982 but only 
$1,000,000 was appropriated; in federal fiscal year 1991 $36,000,000 was authorized 
but only $9,109,000 was appropriated. During federal fiscal years 1992 and 1993 

176 



$15,321,000 and $73,630,000 was appropriated respectively, with authorization in both 
years set at such sums as necessary.^ The resurgence of TB in the United States 
during the 1980s illustrates that the danger of TB to the nation's health is a constant 
threat. 



Acknowledgments 

This research was supported by a grant from the Health Care Financing 
Administration of the U.S. Department of Health and Human Services. The 
conclusions presented in this paper do not necessarily reflect the views of the Health 
Care Financing Administration. 

The author thanks the administrators at the state health departments in each 
state and the District of Columbia who took the time to complete the questionnaire 
and to verify the data. Without their cooperation, this study would not have been 
possible. 



177 



References 

1. Centers for Disease Control. Summary of notifiable diseases, United States, 1990. 
MMWR . 1991;39:10-12. 

2. Gittler, J. Controlling resurgent tuberculosis: public health agencies, public policy, 
and law. Journal of Health Politics. Policy, and Law . 1994; 19:107-147, Table 1. 

3. Centers for Disease Control and Prevention. Summary of Notifiable Diseases. 
United States. 1995 . MMWR. 1996; 44(53): 1-87. 

4. American Thoracic Society, Medical Section of the American Lung Association. 
Control of tuberculosis in the United States. Am Rev Respir Dis. 1992; 146: 1623- 
1633. 

5. Lerner, B.H. New York City's tuberculosis control efforts: the historical limitations 
of the "war on consumption." American Journal of Public Health . 1993; 83: 758- 
766. 

6. Etkind, S.C. The role of the public health department in tuberculosis. Medical 
Clinics of North America . 1993; 77: 1303-1314. 

7. Gittler, J. Controlling resurgent tuberculosis: public health agencies, public policy, 
and law. Journal of Health Politics. Policy, and Law . 1994; 19:107-147, Table 2. 

8. U.S. Congress House Committee on the Budget. 1981 . Omnibus Reconciliation Act 
of 1981, vol. 2. 97th Congress, 1st session, H.R. 97-158. 

9. Gittler, J. Controlling resurgent tuberculosis: public health agencies, public policy, 
and law. Journal of Health Politics. Policy, and Law . 1994; 19:107-147, Table 2. 



178 



Chapter 10 
Tuberculosis and HIV Infection: 
Utilization of Public Programs to Fund Treatment Services'^ 

Introduction 

The annual incidence of tuberculosis (TB) in the United States fell from 56 
cases per 100,000 population in 1952 to 9 cases per 100,00 population during 1985, 
or about a 5 percent decrease per year.^ The consistent annual decline of the 
incidence of TB in the United States ended in the mid-1980s, with rates increasing 
from 9.1 TB cases per 100,000 population in 1988 to 10.5 cases per 100,000 
population by 1992.^ This trend of the increasing incidence of TB in the United States 
was reversed in 1993, with the annual incidence of TB falling to 9.8 cases per 100,000 
population in 1993, to 9.4 cases per 100,000 population in 1994, and to 8.7 cases per 
100,000 population in 1995.^ The recent resurgence of TB, however, underscores the 
importance of developing and implementing effective public health programs and 
policies to combat this communicable disease. 

TB control experts have recommended that public health departments develop 
and administer a number of policies and programs to eliminate TB. For example, the 
Advisory Council for the Elimination of TB recommends that public health departments 
implement TB identification, screening, and reporting programs.* Directly observed 
therapy programs^ ^ ^ ® and nursing case management® are advocated as 
important public health approaches to the control of TB. The purpose of this article is 
to present treatment approaches that state and local health departments have 



^his research is published in AIDS & PUBLIC POLICY JOURNAL, Vol. 12, No. 
4, 1997. 

179 



developed and implemented in each of the 50 states and the District of Columbia to 
combat TB. Given the financial pressures confronting health departments in their 
efforts to control TB, this research also presents how public health departments are 
utilizing a number of different public programs to pay for needed TB-related care. 

TB and AIDS 

The increase in the rates of TB cases that began in the mid-1980s has been 
mostly confined to urban areas with high rates of HIV infection.''° Seroprevalence 
surveys in TB clinics confirm a high rate of HIV infection among people with TB and 
matching TB and AIDS registries demonstrates a strong association between the two 
diseases. During 1990 54.2 percent of people between 20 and 49 years of 
age who died with TB also had AIDS listed on their death certificates.^^ More than 1 
in 10 people with AIDS in New York and about 1 in 14 people with AIDS in Illinois had 
active TB in 1993.^^ TB is probably the only HIV-related disease that can be 
transmitted to someone who is not infected with HIV.^^ The increasing incidence of 
HIV infection and the prevalence of TB in low-income and disenfranchised people 
creates a public health threat. ""^ The incidence of TB and HIV among low-income 
people increases the role of public programs in funding the health services necessary 
to treat TB and HIV-related illness. This article will examine the role of public 
programs in funding TB-related health services. 

Methodology 

To identify how public health programs are treating TB, and utilizing public 
programs to help pay for this care, a questionnaire was mailed to the directors of the 
state health departments in each state and the District of Columbia during May, 1995. 
(In almost all cases, the questionnaires were completed and returned by 

180 



administrators of tlie states' TB control programs.) By August, 1995 all 50 states and 
the District of Columbia returned completed questionnaires which included questions 
on TB treatment policies and public funding sources for TB-related care. Tables 
summarizing the results of the survey were mailed to the health departments for 
verifications and updates in October, 1995. 

TB Treatment Policies 
The availability of TB treatment services and transportation to care are 
frequently problems for people in high incidence and socioeconomically disadvantaged 
areas. ^® The Advisory Council for the Elimination of Tuberculosis recommends that: 
TB treatment services and related transportation should be available at no cost to 
patients; special treatment housing centers should be established for homeless people 
at risk for TB; directly observed therapy (DOT) programs be considered for all TB 
patients; and outreach workers be used as a link between the TB patient and health 
professionals.""^ 

DOT programs, which involve watching patients take each dose of medicine, 
have been successful in the treatment and control of TB.^ Some have argued that 
"sound public health practice dictates" the use of DOT during TB treatment.^^ 
Between 1992 and 1994 the number of reported TB cases in New York City declined 
by 21 percent, with DOT an important contributor to this decline.^ Similarly, there 
was a decline in the incidence of TB in Baltimore during the 1980s after 
implementation of a DOT program.^^ 

The survey of the directors of state health departments asked if state or local 
health departments in their states provide a range of health care services at no charge 
to TB patients. The questionnaire provided a list of services, with a request to circle 

181 



any that apply. The services listed on the questionnaire were: TB treatment services; 
TB drug therapies; transportation to health services; special treatment housing 
centers; directly observed therapy programs; outreach workers; and "other health 
services (please describe)." The responses from each state and the District of 
Columbia are presented in Table 10-1. All states reported providing free TB drug 
therapies and most states provided free TB treatment services (although some states 
reported a sliding scale fee or nominal fees for these services). In addition, all states 
reported the use of DOT programs. 

According to the survey responses, public health departments in most states 
utilized outreach workers in the effort to treat and control TB. These outreach workers 
can be of the same ethnic or cultural background as the patient and can establish a 
stronger relationship with the TB patient than the more traditional health 
professional.^* These outreach workers act as extensions of health providers by 
locating TB patients, helping patients with appointments, encouraging adherence to 
treatment, and delivering medications and observing that proper doses are taken.^ 

Most states provided transportation to health care, while most states responded 
that they did not provide special treatment housing centers. Among other services 
that public health departments provided in the treatment of TB patients were: 
coordination of services with other agencies; sputum collection; inpatient respiratory 
isolation if needed; medical monitoring for TB treatment; incentives to comply with 
treatment; inpatient diagnostic and outpatient diagnostic and management services; 
HIV testing and counseling; laboratory and X-ray services; isolation housing for 
contagious homeless people; and case management services. 



182 



Table 10-1 
TB-Related Health Services 
(1995) 







Do State or Local 
Health Departments in 
Your State Use Nursing 
Case Management to 
Control artd Treat TB, 
Assigning One Person 
to Each TB Case? 




Do State or Local Health DeF>artments in Your State Provide the Following Health Services at no Charg 


le to People with TB: 


TB Treatment 
Services? 


TB Drug 
Therapies? 


Transportatkm 
to Health Care? 


Special Treatment 
Housing Centers? 


Directly Observed 
Therapy Programs? 


Outreach 
Workers? 


Other 
Health Services? 


Alabama 


yes 


yes 


yes 


yes 


yes 


yes 


none 
mentioned 




Alaska 


no 


yos 


case by case 


no 


yes 


yes 


incentives 


no 


Arizona 


yes 


yes 


yes 


yes 


yes 


yos 


none 
mentioned 


yes 


Artansas 


yes 


yes 


yes 


housing provided 
in motels if needed 


yes 


yes 


no 


no 


Califomia 


yes 


yes 

(Local h 


yes 

ealth departments 


yes 

may offer these servic 


yes 

tes. It depends on th< 


yes 
9 jurisdiction 


none mentkxted 
- some do, some do n 


yes 

ot.) 


Colorado 


yes 


yes 


yes 1 yes 
(1 local health department) 


yes 


yes 


rKxie 
mentioned 


no 


Connecfcut 


yes 


yes 


yes 


no 


yes 


yes 


yes 


yes 


Delaware 


yes 


yes 
'healt 
standa 


no 

h departments in [ 
rds for sinale occu 


no* 

Delaware do pay for tei 
pancv dwellituis with ii 


yes 

Tiporary housing ttiat 
idividual ventilation s 


yes 
nwets 
^ems 


coordination of 
services with 
crther agencies 


yes 


District of 
Columbia 


yes 


yes 


yes 


no 


yes 




ix>ne 
mentioned 


yes 


Florida 


yes 

[minimal f66 chi 
if patient ca 


yes 
afgdd; waive 
nnot pay.) 


yes 

[in some counties' 


yes 


yes 


yes 


yes 


yes 

(in some counties) 


Georgia 


ves 


ves 


some 


yes 


ves 


yes 


some 


yes 


Hawaii 


V8S 


ves 


occasionally 


yes 


ves 


ves 


none 
mentioned 


yes 


Idaho 




yes 


no 


no 


yes 


yes 


none 
mentioned 


yes 


Illinois 


yes 


yes 


yes 


no 


yes 


yes 


none 
mentioned 


yes 


Indiana 


no 


yes 


no 


rw 


yes 


yes 


none 
mentioned 


yes 


Iowa 


(**Statean« 
do conduct s 


yes 
Jk>cal health 
kin testing, s 


no 

departments in kM 
Mitum specimen o 


no 

va do not provide x-ray 
ollecting, and conduct 


yes 

servKes, physical & 

nral intArvMWQ nf TB 


yes 
lams, or TB c 
suspects, TE 


sputum collection 
linics. However, kx»l 
patients, and people ( 


yes 

health departments 
yn preventive therapy. 


Kansas 


yes 


yes 


yes 


r» 


yes 


yes 


none 
mentioned 


in some cases 


Kentucky 


was 

(R 


WAS 

atients are ch 


yes 

arged a nominal fe 


yes 

le for these services, v 


rfiich is v\/aived if a ps 


itient is unal>l 


inpatient respiratory 
isolation as needed 
e to pay.) 


yes 

(Polnies may vary 
with local health depts.) 


Louisiana 


yes 


yes 


yes 


rto 


yes 


yes 


no 


yes -outreach 
workers 


Maine 


yes 


yes 


no 


rto 


yes 


yes 


no 


ves 


Maryland 


yes 


yes 


sometimes 


no, but beginning 
to provide housing 
in motels for some 


yes 


yes 


medical monitoring 
for TB treatment 


yes 


Massachusetts 


yes 


yes 


no, not routine 


no 


yes 


yes 


incentives/ 
enablers 


yes 


Michigan 


yes 


yes 


'a little* 


no 


yes 


yes 


none 
mentioned 


yes 


Minnesota 


no*** 


yes 
***Tv»k> 

no bi 


yes 

cal health departm 
jdget for clinic or h 


no 

ents have public clinic 
ospital costs. The sei 


yes 

s. Local health depc 
-vices provided deper 


yes 
irtments provi 
id on the patii 


de direct services, bul 
»nt and run the gamut. 


yes 

have 


Mississippi 


yes 


yes 


yes 


individual housing 
as needed but not 
at centers 


yes 


yes 


inpatient diagnostic 
& outpatient diag- 
nostic/mgt. services 


yes 


Missouri 


yes 


yos 


yes 


no 


yes 


yes 


no 


yes 



183 



J 



TaUe 10-1 
TB-Related Health Services 
(1995) 







Do State or Local 
Health Departments in 
Your State Use Nursing 
Case Management to 
Control and Treat TB, 
Assigning One Person 

to Each TB Case? 




Do State or Local Health Departments in Your State Provkto the Fo)k>wing Health ServKes at no Charg 


e to People with TB: 


TB Treatment 
Servk»s? 


TB Drug 
Therapies? 


Transportatnn 
to Health Care? 


Special Treatment 
Housing Centers? 


Directly Oliserved 
Therapy Progrants? 


Outreach 
Workers? 


Other 
Health Sennces? 


Montana 

(■ 


no~ 

■If the patient la( 
to complete c 


state only 
;ks ability to p 
irectly observ 


yes 

ay, ktcal or state h 
ed therapy treatme 


no- 

ealth department will v 
>nt plan. These senno 


yes 

MHfc to cover the cos 
es are provided as nc 


yes 
s of physiciar 
teded when n 


yes 

1 visits and housirtg if i 
other means are ava 


yes 

lecessary 
liable.) 


Nebraska 


yes 


yes 


yes 


no 


yes 


yes 


none 
mentkmed 


yes 


Nevada 




yes 


yes 


yes 


yes 


yes 


HIV testing/coun- 
seling referral to 
other health care 


no 


New Hampshir 


yes 
(If financialh 


yes 
/ eligible) 


no 


no 


yes 


yes 


yes 


yes 


Now Jofsoy 


yes — 


yes 

( — va 


yes 

ries from dink: to i 


no 

:iink: - some charge ft 


yes 
rservKes) 


yes 


diagnostic 
servwes — 


yes (some nurse 
case mgt.; some non- 
nurse case mgt.) 


New Mexico 


yes 


yes 


no 


no 


yes 


yes 


lab servwes at>d 
X-ray sennces 


yes 


NewYor1( 


yes 


yes 


yes 


yes 


yes 


yes 


none 
mentk>ned 


yes 


North Carolina 


yes 


yes 


yes 


yes 


yes 


yos 


diagnostic 
servwes 


yes 


North Dakota 


no 


yes 


yes 


no 


yes 


yes 


no 


yes 


Ohio 


yes 


yes 


yes 
(partial) 


no 


yes 


yes 


no 


yes 


Oklahoma 


yes 


yes 


yes 
Oimited) 


no 


yes 


no 


isolatk>n housing 
for contagkMjs 
homeless people 


no 


Oregon 


yes 


yes 

(Local he 


If r)ecessary 
alth departments ( 


if necessary 
try to collect thIrd-ps 


yes 

irty payments.) 


yes 


rwne 
mentkHied 


yes 


Pennsylvania 


yes 


yes 


yes 
(some) 


yes 


yes 


yes 


none 
mentk>ned 


no 


Rhode Island 


yes 


yas 


yes 


no 


yes 


yes 


none 
mentKMied 


yes 


South Carolina 


yes 


yes 


yes 


yes 




yes 


hospitalizatnn 


yes 


South Dakota 


yes 


yes 


no 


no 


yes 


yes 


no 


no 


Tennessee 


yes 


yes 


yes 


yes 


yes 


yes 


yes 


yes 


Texas 


yes 


yes 


yes 


yes 


yas 


yes 


none 
mentkxted 


yes 


Utah 


yes 


yes 


limited 


yes 


yes 


yes 


norw 
mentk>ned 


yes 


Vermont 


yes 


yBS 


no answer 


no answer 


yes 


yes 


norw 
mentk>ned 


yos 


Virginia 


yes 

slkling s 


yes — 
u»lefees 


yes 


indivklual housing 
for homeless 
withTB 


yes 


yes 


acute care 
diagnostK/case 
mgmt. serrices 


yes 


Washington 


yes 

(sikjing sci 
cannot den^ 


yes 
ale fees; usua 
/servfees If th 


yes 
lly charge but 
tey do not pay) 


no, but 1 center 
is coming 


yes 


yes 


HIV testing 
and counseling 
referral 


no 


West Virginia 


yes 


yes 


no 


no 


yes 
(limited) 


yes 
(limited) 


no 


yes 


Wisconsin 


yes, but only in 
Milwaukee 


yes 


yes 


no 


yes 


no 


no 


yes 


Wyoming 


no for hospital 
care & doctor 
office visits 


yes 


no 


no 


yes 


no 


yes 


95% 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of the state health departments. This research 
was funded by a grant from the Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



184 



Nursing case management has been advocated as a comprehensive approach 
to ensure that TB patients complete therapy.^ With this case management, one 
person is assigned to each case of TB. Among the responsibilities of the case 
manager are: assessment of the patient's health and psychosocial needs; 
assessment of factors affecting adherence to treatment, access to health care, and 
cultural or language barriers to care; assignment of people to provide DOT; 
assignment of outreach workers; monitoring care during treatment; and assisting the 
TB patient with any necessary support services to ensure compliance with therapy.^ 
The questionnaire asked the directors of the state health departments if state or local 
health departments in their states utilized "nursing case management to control and 
treat TB, assigning one person to each case of TB?" As Table 10-1 documents, public 
health departments in most states utilized these nursing case managers to control and 
treat TB. Many of these treatment-related services for TB can be funded by a number 
of public programs. 

Funding TB Care 

The availability of financial resources to treat and prevent TB is a major 
concern, as the costs for TB treatment increase without appropriate increases in 
resources to metropolitan health departments.^ Low incomes, lack of health 
insurance, and limited access to health care for many people with TB limit their ability 
to adhere to treatment, with the lack of adherence leading to treatment failure, drug 
resistance, continuing spread of infection, and death.^ With many TB patients 
lacking health insurance and health departments lacking sufficient resources to provide 
all essential TB-related services, public health officials should utilize Medicare, 
Medicaid, and other sources of public funding for TB care.^ 

185 



The questionnaire asked the directors of the state health departments if state or 
local health departments in their state evaluated people with TB for eligibility for 
Medicaid, Medicare, and programs funded by Title I and II of the Ryan White CARE 
Act during 1995. As Table 10-2 illustrates, health departments in many states did not 
evaluate TB patients for eligibility for these public programs, although Connecticut and 
Minnesota reported that private physicians do this evaluation. Mississippi responded 
that local health department staff "as a routine - not policy" refer patients to agencies 
that can assist TB patients with the eligibility process for these programs. An 
important role for case managers in the treatment of TB can be to assist patients with 
identifying public programs to cover their care and to guide them through the 
application process.^^ ^ Utah replied to the survey that a Medicaid nurse case 
manager was hired to evaluate TB patients for Medicaid eligibility. 
The Ryan White CARE Act Programs 

Given the susceptibility of people with HIV infection to TB, programs funded by 
the Ryan White CARE Act can provide health services to people with HIV who are also 
infected with TB. Title I of the CARE Act provides funds to eligible metropolitan areas 
(EM As) with the largest number of AIDS cases. EM As are required by the CARE Act 
to provide a continuum of outpatient and ambulatory health and support services to 
people with HIV, including case management services and comprehensive 
treatment.^ Title II of the CARE Act allocates funds to the states to provide HIV- 
related medical and support services, allowing the states to implement HIV consortia 
programs, HIV/AIDS drug assistance programs, home and community-based care 
programs, and health insurance continuation programs.^ 



186 



Table 10-2 
Funding for TB Care 
(1995) 





Do State or Local Health Departments in Your State Evaluate People with TB for Eligibility for the Following Programs: 


Medk^id 


Medicare 


Title 1 - Ryan White* 


Title II - Ryan White 


Alabama 


no 


nn 


INU 1 lUC 1 lunuo 

during 1995 




Alaska 


no 


1 i\j 


no 1 luc 1 Tunuo 
during 1995 


nu 


Arizona 


no 


no 


no 


no 


Arkansas 


yes 


yes 


No Title 1 funds 
during 1995 


no 


California 


yes 


yes 


yes 


yes 


Colorado 


yes 


yes 


yes 


yes 


Connectrcut 


yes 


yes 


yes 


yes 


"The state health department is required by law to pay for all TB care and treatment Since TB care and 
treatment in Connecticut is delivered by private physk:ians, those physrcians must evaluate patients for all third party 

payers and petition third party payers for payment before the state health department can pay for care/treatment" 




yes 


yes 


No Title 1 funds 
during 1 995 


yes 


Disstrict of 

Columbia 


yes 


yes 


yes 


yes 


Florida 


yes 


yes 


yes 


yes 


Georgia 


no 


no 


yes 


yes 


Hawaii 


no 


no 


No Title 1 funds 
during 1995 


no 


Idaho 


no 


no 


No Title 1 funds 
during 1995 


no 


Illinois 


no 


no 


no 


no 


Indiana 


no 


no 


No Title 1 funds 
during 1995 


no 


Iowa 


no 


no 


No Title 1 funds 
during 1995 


no 


Kansas 


yes 


yes 


yes 


yes 


Kentucky 


yes 


yes 


No Title 1 funds 
during 1995 


yes 


Louisiana 


yes 


no 


no 


no 


Maine 


yes 


yes 


No Title 1 funds 
during 1995 


no 


Maryland 


no 


no 


no 


no 


Massachusetts 


under consideration, 
currently being piloted 


no 


yes where 
applrcable 


yes where 
applk^ble 


MIchiaan 


yes 


yes 


yes (where primary 
M.D.s are available) 


no 


Minnesota 


yes 


no 


No Title 1 funds 
during 1995 


yes, some (metro) 


'The state TB program does not evaluate for eligibility in any of these programs. [Local health departments may, 
as indk:ated.] ... The majority of TB patients in Minnesota are treated by private physrcians who may 
evaluate eligibility for these programs as appropriate.") 


Mississippi 


no 


no 


No Titie 1 funds 
during 1995 


yes 


"We do not evaluate for eligibility. However, we do ask clients about insurance coverage and bill for eligible servrce. 
If a client does not have coverage and appears to be eligible, as a routine - not polky, local staff will refer 
patients to other agencies that would be able to further assist the patient/client in determining eligibility." 


Missouri 


yes 


yes 


yes 


yes 



187 



Table 10-2 
Funding for TB Care 
(1995) 





Do State or Local Health Departments in Your State Evaluate People with TB for Eligibility for the Follovwng Programs: 


Medicaid 


Medk;are 


Title 1 - Ryan White 


Title II - Ryan White 


Montana 


yes 


yes 


No Title 1 funds 
dunng 1995 


yes 


Nebraska 


yes 


yes 


No Title 1 funds 
during 1995 


yes 


Nevada 


yes 


no 


No Title 1 funds 
dunng 1995 


yes 


New Hampshir 


yes 


yes 


No Title 1 funds 
during 1995 


yes 


New Jersey 


yes** 


yes** 

** not routinely, but va 


yes** 

lies from clinic to clinic 


yes** 


New Mexico 


no 


no 


No Title 1 ^nds 
during 1995 


no 


New York 


yes 


no 


no 


no 


North Carolina 


yes 


yes 


No 1 lue 1 funds 
during 1995 


no 


North Dakota 


yes 


yes 


No 1 itie 1 funds 
during 1995 


yes 


Ohio 


yes 


yes 


yes (the Cleveland area 
began receiving Tide 1 
funds in 1996) 


yes 


Oklahoma 


yes 


no 


No Title 1 funds 
during 1995 


yes 


Oregon 


yes 


yes 


yes 


yes 


Pennsylvania 


yes 


no 


not applk:able 


not applicable 


Rhode Island 


yes but inconsistently 


yes but inconsistently 


No Title 1 funds 
during 1995 


no 


oouui waroiina 


yes 


yes 


No Title 1 funds 
uunng 1993 


yes 


South Dakota 


yes 


yes 


No Title 1 funds 
during 1995 


yes 


Tennessee 


yes 


no 


No Title 1 funds 
during 1995 


no answer 


Texas 


yes 


no answer 


no answer 


yes 


Utah 


yes*** 


not routinely 


No Title 1 funds 
during 1995 


no answer 


*** "We hired a Medicakl nurse case manager to evaluate infected and diseased TB patients." 


Vermont 


yes 


no answer 


No Title 1 funds 
during 1995 


no answer 


Virginia 


yes 


no 


yes 


yes 


Washington 


yes 


yes 


yes 


yes 


West Virginia 


no 


no 


No Title 1 funds 
during 1995 


no 


Wisconsin 


yes 


no 


No Title 1 funds 
during 1995 


no 


Wyoming 


yes 


yes and no~ 


No Tite 1 funds 
during 1995 


yes 


~"Some county health departments are Medicare certified and bill Medicare. Some do not" 



*Title I programs funded by the Ryan White CARE Act are available only in large metropolitan areas with high incidences of AIDS. 
Several states are not eligible for Title I funds. States not receiving Title I funds during 1995 are identified with "Fact Sheet", 
Office of Communications, Health Resources and Services Administration, U.S. Department of Health and Human Services, Rockville, MD. 
Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1 995 survey of the state 
health departments. This research was funded by a grant from the Health Care Financing Administration, U.S. Department 
of Health and Human Services (grant # 18-P-90286/5-01). 

188 



HIV consortia funded by Title II of the CARE Act can provide a number of the 
TB-related services listed in Table 10-1 to eligible people with HIV.^ For example, 
HIV consortia in many states provide case management services, primary medical 
care, personal care, transportation services, nutritional services, and housing 
assistance. The Title II program also funds HIV/AIDS drug assistance programs 
(HADAPs).^ Depending upon the availability of funding, these HADAPs may provide 
TB-related medications to eligible people infected with TB and HIV (see Table 10-3). 
In addition, home and community-based care (H&CBC) programs funded by Title II 
can provide a range of TB-related services to eligible people with HIV and TB.^ 
These Title II H&CBC programs, which are implemented in a number of states, fund a 
range of services, among these beneficial to people with HIV and TB are: durable 
medical equipment, in-home diagnostic testing, comprehensive nurse case 
management, attendant care, day treatment services, personal care, and housing 
assistance. 

The Medicare Program 

In addition to the elderly, Medicare coverage is potentially available to the 
disabled if they meet certain work-related requirements. For a person with TB to 
become eligible for Medicare requires meeting eligibility criteria for Social Security 
Disability Insurance (SSDI), including disability status (similar to Medicaid, people with 
AIDS have presumptive disability), sufficient work-related history, and a 29-month 
waiting period (5 months from disability status for SSDI payment to begin, then 24 
additional months for Medicare coverage to begin).^ Although not a major payer of 
the care needed by people with AIDS who are also infected with TB, the Medicare 
program can be a source of funding for inpatient treatment for people who are eligible. 

189 



One study found that expenditures for inpatient care of patients with TB accounted for 
60 percent of TB-related spending.^ For people who are eligible for benefits, the 
Medicare program also can cover inpatient and outpatient medical care, as well as the 
diagnostic, lab, and X-ray services mentioned in Table 10-1. However, the Medicare 
program does not cover and reimburse outpatient prescription drugs. 
The State Medicaid Programs 

Financial eligibility requirements for Medicaid vary from state to state, with 
eligibility potentially available to the elderly, the blind, and the disabled, as well as 
anyone receiving benefits from the Aid to Families with Dependent Children 
program."^ As a result of a ruling by the Social Security Administration, people with 
a diagnosis of AIDS are presumed to meet the disability standard.'*^ In July 1993 the 
Social Security Administration published a listing of HIV-related conditions that can be 
used to establish presumptive disability for people infected with HIV but without a 
diagnosis of AIDS.'*^ 

The state Medicaid programs must cover and reimburse inpatient and 
outpatient hospital care, physician services, rural clinic services, laboratory services, 
and X-ray services for eligible recipients. In addition, the state Medicaid programs 
have the option to cover prescription medications, clinic services, diagnostic services, 
screening services, personal care, transportation to health care, case management, 
and respiratory services."*^ Hence, the Medicaid programs can cover many of the 
TB-related services listed in Table 10-1. In addition, these Medicaid services can be 
specifically matched to the care needs of Medicaid recipients infected with TB and 
HIV. For example, the diagnostic-related group (DRG) payment system for inpatient 
hospital care implemented by the New York State Medicaid program during 1994 had 

190 



numerous DRGs for patients infected with botii HIV and TB.'*^ Similarly, a number of 
state Medicaid programs adjust payments to nursing facilities to reflect the higher 
costs associated with respiratory therapy and isolation for TB/^ 

Home and Community-Based Care Waivers 

A number of state Medicaid programs use the home and community-based 
waiver programs to offer an expanded array of services to Medicaid recipients with 
AIDS. Section 2176 of the 1981 Omnibus Budget Reconciliation Act gives the Health 
Care Financing Administration the authority to waive certain federal Medicaid 
regulations to allow the states to include home and community-based care in their 
Medicaid coverage, targeted to specific Medicaid recipients such as the elderly or the 
physically disabled who would otherwise have to be institutionalized.'*^ The 
Omnibus Budget Reconciliation Act of 1985 amended Section 2176 to allow AIDS- 
specific, Medicaid home and community-based waiver programs."*® The Medicaid 
programs can use either the original waiver program to provide special services to 
Medicaid recipients with AIDS who also have TB through their disability status or the 
AIDS-specific waiver program. These waiver programs have more generous eligibility 
requirements and can cover services not included in the regular Medicaid program."*® 

The questionnaire asked the directors of the state health departments if state or 
local health departments in their state provided care to people with TB who received 
Medicaid coverage under the home and community-based care waiver programs. As 
Table 10-3 documents, a number of states reported that Medicaid recipients with TB 
received sen/ices through these waiver programs. The questionnaire also asked the 
directors to identify any waiver services "that were beneficial to the care and treatment 
of people with TB," with the responses presented in Table 10-3. Among the services 

191 



TabteKM 

Coordination of TB Care with Other Klealth Programs 
(1995) 





Have State or Local Health Departments in Your State Provided Care 
to People with TB wtw Receive Medicaid Benefits Utilizing Services 
Covered Under ttie Medicaid Home and Community-Based Care Waiver for 


For People with TB Who are Eligible for Medicakl or 
Ryan White Programs in Your State, do the 
Prescription Drug Formularies of These Programs Include 
an FDA-Approved Drugs to Treat TB Oncluding MDR-TB*)? 


TheElderty 
and Disabled? 


People with AIDS? 


Waiver Services 
Beneficial to TB Care 




cHa I . Rvan \A/hita* 
luo 1 - r\y<aii wiiilo 


THIa 11 . Puan \A/hftA 
1 IWS 11 ** Ixyail VVllilo 




yes 


yes 


LJUJ Skti VIvv oliu 

hospitalization 


TB Control Program 
not involved with 
Medicaid billing 


no Title 1 program 


no 


AlaslcB 


no answer 


r>o answer 


no answer 


unknown 


unknown 


unknown 


Arizona 


no 


no 


not applicable 


yes 


yes 


yes 


Arkansas 


no 


no 


r)ot applicable 


yes 


yes 


yes 


Caiifbmla 


yes 


yes 


case management and 
support services (food, 
substance abuse treat- 
ment, housing, etc.) 


no artswer 

dr 


There are 7 Title 1 
areas in ttie state; 
do not know if TB 
ugs on their fbrmulari 


no FDA-approved 
drugs for TB on 
Title II formulary 

es 


Colorado 


rMt available 


yes 


RN, respiratory therapy, 
LPN, home health aide, 
personal care services 


yes 


no - TB drugs are 
provided urKier 
Medicaid formulary 


rto - TB drugs are 
provkied urxier 
Medk:aid formulary 


Conr>ecticut 


yes 


yes 


not known 


unknown 


unkrwwn 


unkrwwn 


Delaware 


yes 


yes 


independent Irving 


yes 






Ostrict of 

Columbia 


no 


no 


not applicable 


yes 


yes 


yes 


Florida 


no 


yes 


possibly home 
health services 


yes 


no - TB drugs not 
provided; TB drugs 

nmvuHAH u/ith efatA 

general revenues 


no - TB drugs not 
provided; TB drugs 

^MWKJIMJ Willi ttmWi 

general revenues 


Georgia 


no 


yes 


some case mgmt 




yes 




Hawaii 


rto 


rw 


not applicable 


no 


no 


no 


Idaho 


no 


no 




yes 


no TB drugs 
covered 


no TB drugs 
covered 


Illinois 


tyo 


no 




no TB drugs 


no TB drugs 


no TB drugs 


Indiana 








yes 


no Title 1 program 


noTBdnjgs 

COVOTOd 


Iowa 


no 


no 


iivt appucaoie 


state TB program 


no Title 1 program 


3 Title II consortia 

nmuiHA all Hnmc 
^wvruv all uiu^d 

until they reach fiscal 

limit* 1 ^M^^Artiiim 

provkles no TB drugs 


K3ns3s 


do notlmow 


do not know 


do not know 


neaiui aeparuneni 
provides TB drugs 


no \soni9} 


no {^sOntvf 


KAntiu^kv 


no 


no 


not applicat>le 


yes 




ETH,PZA,orSM 
not covered) 


Louisiana 


no 


yes 


home health 


yes 


yes 


yes 


Maine 


no 


no 


r>ot applicable 


do not know 


no Title 1 program 


rw*** 


Maryland 


no 


no 


rtot applicable 


yes 


Title 1 in Maryland 
does not cover drug 


no - only first line 
drugs availat>le 


Massachusetts 


no 


no 


not applicable 


health department 
provides TB drugs 


health department 
provktes TB drugs 


health departmerrt 
provides TB drugs 


Michigan 


do not know 


do not know 


do not know 


yes 


not listed 


no 


Minnesota 


yes 


dortotkrxMV 


yes 


yes 


yes 


yes 


Mississippi 


no 


no waiver program 


not applicat>le 


yes 


no Title 1 program 


no 


Missouri 


yes 


yes 


medications, physician 

visits, home health 
care, case management 


yes(ask>ngas 
manufacturer signs 
ret)ate agreement) 


yes 


yes 



192 



TabteKW 

Coordination of TB Care with Other Health Programs 
(1995) 





Have State or Local Health Departments in Your State Provided Care 
to People with TB wtra Receive Medicaid Bertefits Utilizing Services 
Covered Ur)der the Medicaid Home and Community-Based Care Waiver for 


For People with TB Who are Eligit>le for Medicakl or 
Ryan White Programs in Your State, do the 
Prescription Drug Formularies of These Programs Include 
all FDA-Approved Drugs to Treat TB (Including MDR-TB*)7 


The Elderly 

an/4 

ano L^tsaoieci t 


r^Wpw wiui niL/o r 


Waiver Servk»s 


Medicaid 


itie 1 - Ryan White* 


Title II - Ryan White 


Montana 


unknown 


unkrKiwn 


unknown 


yes 




yes 




yes 


yes 


directly ot>served 


ye* 


yes 


yw& 




no 


yes 


outreach servk»s in the 
not attending TB clinic 




iiv 1 iw 1 ^ujjiaiii 


yws 


New Hampshir 


no 


no 


riQi appilCclDiO 


yes 


yes 


yes 


New Jersey 


yes 


yes 


and prevention 


yes 


yes 


yes 


New Mexico 


uniurawn 


yes 


cado iiidnayofneni, 
private duty nursing. 

hAmAffn^^Ar/^^rcnnsil /^ta 
1 lOlTrol 1 Ull\t3l/|WR>Onal CalO 


yes 


no Tide 1 program 


no 


Now York 


yes 


yes 


no 




yes 


y» 




unknown 


unkrtown 


unknown 


yes 


unknown 


unknown 


North Dakota 


uniuK/wn 


no 




state health depL 

nrov/iHA^ all '1 K Hnifw 

^ UVIUVO all 1 D Ul 


no Title 1 program 


yes 


Ohio 


yes 


yes 


k>cal level 


no 


unknown 


unknown 


Oklahoma 


no 


no 


not applical>le 


yes 


fW) TiHa 1 nmnram 
iiv 1 lire 1 i^u^iaiii 


no 


Oregon 


Oregon Health Plan 
IS used 


Oregon Health Plan 
is used 


case management 


*Th 


O THitll" pi WIUV9 1 D ^ 


rugs " 


Pah fVQvluan ui 
r VI II idjri vai iMi 


no 


no 


not appticat>le 


yes 


TMa 1 iv^^rtinn 
iiu 1 lire 1 piuyiaiii 


rv> TMa II Hn m 

IIV 1 lUO II uiuy 

program- 


Ixl n^JXj I9IOI lU 

try 


no f although we are 


no 

1- ) 


not applicable 


Ul IIU IWVI 1 


r)o 


no 


ovum waiuiiiMi 


yes 


yes 


TB sennces provkled 
free of charge to people 
with TB infection or disease 


yes 


XR Hnmc arA mv^ 
1 D Ulli^^ alO pf^^ 

vided free by the 

didW flOOIUI UV|A. 


TR HniTK arA 

1 O UIUy9 alO pi\^ 

vkledfi'eet>ythe 
state health dept* 


South Dal(ota 


yes 


no 


SindUAT 

fffj cUKynw 


no answer 


yes 


yes 


Tennessee 


no 


no 


n 


no - the state does 
not operate Medicakl 

nu/ iHSA^ fTKinsknAH 

Jvl Illalla^V^^ s^O 


no 

re 


no 


Texas 


no 


no 


nOi CippilWaDlt? 


yes 


yes 


yes 


Utah 


yes 


no 


no answer 


yes 


yes 


yes 


Vermont 


not availat>le 


not availak>le 


rK>t available 


not available 


not available 


not available 




no 


no 


not applicable 


yes 


yes 


yes 


Washington 


yes 


yes 


housing and meals 


no (no ftoxin 
or Cipro) 


no (no floxin 
or Cipro) 


no (no floxin 
or Cipro) 


West Virginia 


yes 


yes 


general home 
health services 


yes 


yes 


yes 


Wiscortsin 


data not availat>le 


no 


not applicable 


yes 


no Title 1 program 


no - state general 
revenues cover 
TB medicatior>s 


Wyoming 


yes 


yes 


personal care attendant, 
lifeline, and home- 
delivered meals 


yes 


no Title 1 program 


yes 


* MDR-T6 Is the abbreviation for multi-drug resistant tuberculosis. 




**Title 1 programs funded by the Ryan White CARE Act are available only in large metropolitan areas with high incidences of AIDS. 
Several states are not eligible for Title 1 funds. 


***The drug assistance program in Maine funded by Title II covered AZT, DDI, DDC, Bactrim/Septra, pentamidine, and fluconazole during 1995. 
(Source: Robert J. Buchanan, survey of the state Title II programs, 1 995.) 


~No Title II funds supported the statewide AIDS drug assistance program in Pennsylvania during 1 995. 
(Source: Robert J. Buchanan, survey of the state Title II programs, 1995.) 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 sun/ey of the state health departments. This research 
was funded by a grant from the Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



193 



mentioned were case management, home health and personal care services, 
respiratory therapy, housing, home-delivered meals, directly observed therapy, and 
outreach services in the home for TB patients. 

Drug Formularies 

The questionnaire asked if the drug formularies used by the Medicaid program 
and programs funded by Title I and Title II of the Ryan White CARE Act "include all 
FDA-approved prescription drugs used to treat TB, including multi-drug resistant TB?" 
As Table 10-3 illustrates, most state Medicaid programs cover all these drugs, with a 
number of states reporting that public health departments cover these TB medications. 
However, as Table 10-3 also presents, the Title I and Title II programs in many states 
do not include these TB therapies on their lists of covered medications. Given the 
encouraging results of the new protease inhibitors in treating HIV infection,^ and the 
$12,000 to $15,000 annual cost of these medications per person when used in 
combination drug therapies,^^ the Ryan White programs will face increasing fiscal 
pressures and may have to restrict the other drugs on their formularies. 

Discussion 

After a decade of resurgence, the incidence of TB in the United States resumed 
its long term decline in 1993, 1994, and 1995. As the resurgence of TB during the 
1980s illustrates, however, the threat of this disease to the public's health remains 
present. Aggravating and enhancing the threat of TB in the United States has been 
the emergence of AIDS. The spread of TB among people with AIDS has important 
public health consequences because TB may be the only AIDS-related disease that 
can be transmitted to people who are not infected with HIV.^^ With the increasing 
incidence of AIDS in the United States, public health programs must be maintained 

194 



and expanded to control TB to protect the public health and the health of people with 
AIDS. 

The resurgence of TB during the 1980s also is attributable to inadequate public 
funding for TB control by the federal, state, and local governments.^ In 1981 
Congress created a categorical grant program to state and local governments for TB 
control with section 317 of the Public Health Service Act.^ However, this grant 
program was not funded at authorized levels until 1992. For example, the program 
was authorized at $9,000,000 in federal fiscal year 1982 but only $1,000,000 was 
appropriated; in federal fiscal year 1991 $36,000,000 was authorized but only 
$9,109,000 was appropriated. During federal fiscal years 1992 and 1993 $15,321,000 
and $73,630,000 was appropriated respectively, with authorization in both years set at 
such sums as necessary.^ 

Based on the results observed in New York City and other areas, DOT 
programs have been successful in the control and treatment of TB. Similarly, nursing 
case management offers a comprehensive approach to TB treatment, assigning 
outreach workers, initiating DOT, and assisting the TB patient with any necessary 
services to ensure compliance with therapy. According to the responses to the survey 
conducted for this study, public health departments in all states reported the use of 
DOT programs and most states utilized nursing case management. 

The increased use of nursing case management, TB outreach workers, and 
DOT programs to treat and control TB may require increased public health 
expenditures during the short term in a political environment of contracting public 
resources. However, the costs of the resurgence of TB has been projected at $20,000 
per case in 1990 dollars.^ Each hospitalization for multi-drug resistant TB can cost 

195 



$200,000, which is the equivalent to the cost of providing DOT to 700 TB patients. 
Each dollar spent on TB control programs produces savings of three to four dollars in 
averted TB treatment costs, with even greater savings produced by controlling multi- 
drug resistant TB.^ Hence, nursing case management, DOT, outreach workers and 
other TB control efforts are highly cost/effective.^ Evaluating TB patients for 
eligibility for Medicaid, Medicare, and the Ryan White programs can provide resources 
to care for people with TB. The home and community-based care programs funded 
by Medicaid and by Title II of the CARE Act can be especially helpful to public health 
departments in the fight against TB, covering case managers, outreach workers, and 
the health professionals for DOT programs provided to eligible people with TB. 

The results of the survey conducted for this study indicate that public health 
departments in almost all states are implementing the programs and policies that TB 
experts advocate to control this disease. The implementation of these TB policies and 
programs, combined with dramatically increased federal funding for TB control during 
federal fiscal year 1993, may help to explain why the incidence of TB resumed its long 
term decline in the United States in 1993 after a decade of resurgence. The 
resurgence of TB in the United States during the 1980s, however, illustrates that the 
danger of TB to the nation's health is a constant threat. Utilizing Medicaid, Medicare, 
and the programs funded by the Ryan White CARE Act can provide additional 
resources to fund case management, directly observed therapy, outreach programs, 
and other services that are effective at combatting TB among people with HIV 
infection. 



196 



Acknowledgments 



This research was supported by a grant from the Health Care Financing 
Administration of the U.S. Department of Health and Human Services. The 
conclusions presented in this paper do not necessarily reflect the views of the Health 
Care Financing Administration. 

The author thanks the administrators at the state health departments in each 
state and the District of Columbia who took the time to complete the questionnaire 
and to verify the data. Without their cooperation, this study would not have been 
possible. 



197 



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6. Bayer, R., Dubler, N.N., Landesman, S. The dual epidemics of tuberculosis and 
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16. Hopewell, P. Impact of Human Immunodeficiency Virus Infection on the 
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17. Zolopa, A., et al. HIV and Tuberculosis Infection in San Francisco's Homeless 
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19. Centers for Disease Control. Prevention and control of tuberculosis in U.S. 
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20. Iseman, M.D., Cohn, D.L, Sbarbaro, J.A. Directly observed treatment of 
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1993; 328: 576-578. 

21. Bayer, R., Dubler, N.N., Landesman, S. The dual epidemics of tuberculosis and 
AIDS: ethical and policy issues in screening and treatment. American Journal of 
Public Health . 1993; 83: 649-654. 

22. Frieden, T.R., Fujiwara, P.I., Washko, R.M., Hamburg, M. Tuberculosis in New York 
City - turning the tide. The New England Journal of Medicine . 1995; 333: 229-233. 

23. Chaulk, CP., Moore-Rice, K., Rizzo, R., Chaisson, R.E. Eleven years of community- 
based directly observed therapy for tuberculosis. Journal of the American Medical 
Association . 1995; 274: 945-951. 

24. Etkind, S.C. The role of the public health department in tuberculosis. Medical 
Clinics of North America . 1993; 77: 1303-1314. 

25. Centers for Disease Control. Prevention and control of tuberculosis in U.S. 
communities with at-risk minority populations: recommendations of the Advisory 
Council for the Elimination of Tuberculosis. MMWR . 1992; 41:1-11. 

26. Etkind, S.C. The role of the public health department in tuberculosis. Medical 
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27. Etkind, S.C. The role of the public health department in tuberculosis. Medical 
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28. Leff, D. and Leff, A. Tuberculosis control policies in major metropolitan health 
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29. Centers for Disease Control. Prevention and control of tuberculosis in U.S. 
communities with at-risk minority populations: recommendations of the Advisory 
Council for the Elimination of Tuberculosis. MMWR . 1992; 41:1-11. 

30. Gostin, L. Controlling the resurgent tuberculosis epidemic: a 50-state survey of 
TB statutes and proposals for reform. Journal of the American Medical 
Association . 1993; 269: 255-261. 

31. Stein, G. Tuberculosis and HIV: guidelines for community-based HIV service 
providers ~ a report of the New Jersey community forum on TB and HIV. AIDS 
& Public Policy Journal . 1994; 9: 214-228. 

32. Etkind, S.C. The role of the public health department in tuberculosis. Medical 
Clinics of North America . 1993; 77: 1303-1314. 

33. Bowen, G.S., et al. First Year of AIDS Service Delivery under Title I of the Ryan 
White CARE Act. Public Health Reports . 1992; 107: 491-499. 

34. McKinney, et al., "States' Responses to Title II of the Ryan White CARE Act." Public 
Health Reports . Vol. 108, 1993, pp. 4-11. 

35. Buchanan, R. HIV Consortia Programs Funded by Title II of the Ryan White CARE 
Act: A Survey of the States. AIDS and Public Policy Journal. 1996; 1 1 (3): 1 18-143. 

36. Buchanan, R. and Smith, S. HIV/AIDS Drug Assistance Programs Funded by Title 
II of the Ryan White CARE Act: A Survey of the States. AIDS and Public Policy 
Journal . 1996; 11(4): 185-203. 

37. Buchanan, R. Home and Community-Based Care Programs Funded by Title II of 



201 



the Ryan White CARE Act: A Survey of the States. AIDS and Public Policy 
Journal. 1997; 12(1): 1-20. 

38. Baily, M., Bilheimer, L, Wooiridge, J., Langwell, K., and Greenberg, W. "Economic 
Consequences for Medicaid of Human Immunodeficiency Virus Infection." Health 
Care Financing Review (1990 Annual Supplement): 97-108. 

39. Brown, R., et al. Health Care Expenditures for Tuberculosis in the United States. 
Arch Intern Med . 1995; 155: 1595-1600. 

40. Buchanan, R. Medicaid eligibility policies for people with AIDS. Social Work in 
Health Care . 1996; 23: 15-41. 

41. Congressional Research Service. Medicaid Source Book: Background Data and 
Analysis (A 1993 Update) (Washington, D. C: U. S. Government Printing Office, 
1993). 

42. Federal Register . Vol. 58, No. 126 (July 2, 1993): 36008-36065. 

43. Office of Intergovernmental Affairs, Medicaid Bureau, Health Care Financing 
Administration, HCFA Pub. No. 02155-91. Also in Commerce Clearing House, 
Medicare and Medicaid Guide , para. 15,504. 

44. Buchanan, R. and Kircher, F. Medicaid Policies for AIDS-Related Hospital Care. 
Health Care Financing Review . 1994; 15(4): 33-41. 

45. Buchanan, R. Medicaid Policies for the Nursing Facility Care Provided to Medicaid 
Recipients with AIDS. AIDS and Public Policy Journal . 1995; 10(2): 94-103. 

46. Merzel, Crystal, Sambamoorthi, Karus, and Kurland, "New Jersey's Medicaid 
Waiver for Acquired Immunodeficiency Syndrome." Health Care Financing Review . 
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47. Miller, N., "Medicaid 2176 Home and Community-Based Care Waivers." Health 



202 



Affairs . Vol. 11, No. 4 (1992): 162-171. 

48. Jacobson, Lindsey, and Pascal, AIDS-Specific Home and Community-Based 
Waivers for tlie Medicaid Population (Santa Monica, CA: The Rand Corporation, 
1989). 

49. Buchanan, R. Medicaid eligibility policies for people with AIDS. Social Work in 
Health Care . 1996; 23: 15-41. 

50. Altman, L. Scientists display substantial gains in AIDS treatment. The New York 
Times . July 12, 1996, pp.1, A9. 

51. Winslow, R. Health insurers and HMOs say they'll pay for new AIDS drugs. The 
Wall Street Journal . July 12, 1996, pp. A3, A6. 

52. Hopewell, P.C. Impact of human immunodeficiency virus infection on the 
epidemiology, clinical features, management, and control of tuberculosis. Clinical 
Infectious Disease . 1992; 15: 540-547. 

53. Gittler, J. Controlling resurgent tuberculosis: public health agencies, public policy, 
and law. Journal of Health Politics. Policy, and Law . 1994; 19:107-147, Table 2. 

54. U.S. Congress House Committee on the Budget. 1981. Omnibus Reconciliation Act 
of 1981, vol. 2. 97th Congress, 1st session, H.R. 97-158. 

55. Gittler, J. Controlling resurgent tuberculosis: public health agencies, public policy, 
and law. Journal of Health Politics. Policy, and Law . 1994; 19:107-147, Table 2. 

56. Frieden, T.R., Fujiwara, P.I., Washko, R.M., Hamburg, M. Tuberculosis in New York 
City - turning the tide. The New England Journal of Medicine . 1995; 333: 229-233. 

57. Iseman, M.D., Cohn, D.L, Sbarbaro, J.A. Directly observed treatment of 
tuberculosis: we can't afford not to try it. The New England Journal of Medicine . 
1993; 328: 576-578. 

203 



58. Institute of Medicine. Emerging Infections: Microbial Threats and Health in the 
United States , ed. J. Lederberg, R.E. Shope, and S.C. Oaks, Jr. (Washington, D.C.: 
National Academy Press, 1992). 

59. Frieden, T.R., Fujiwara, P.I., Washko, R.M., Hamburg, M. Tuberculosis in New York 
City - turning the tide. The New England Journal of Medicine . 1995; 333: 229-233. 



204 



Chapter 11 
Summary and Conclusions 

Objectives 

The objectives of this study are to describe and analyze a range of state- 
administered, government programs available to cover and finance the health care 
needed by people who are infected with the human immunodeficiency virus (HIV). 
The study focuses on: Title II programs of the Ryan White CARE Act; Medicaid 2176 
home and community-based care waivers; state-funded, non-Medicaid, medical 
assistance programs (MAP); and the actions of state health departments that address 
the incidence of tuberculosis (TB), especially among people with HIV illness. The 
research also presents assessments that administrators of AIDS service organizations 
(ASOs) at the state and local level have about how well each of these state- 
administered public programs (as well as the federal Medicare program) addresses 
the health care needs of people with HIV in their states. 

Survey Results 

The project collected data on these state-administered public programs with a 
series of nine separate surveys that were mailed to program administrators in each 
state during 1995 through 1997. These surveys of the administrators of the various 
state-administered public programs identify states that have developed innovative 
policies to assist people with HIV gain access to needed health services. These 
innovative policies can then be used as models to assist other states in the 
development of similar AIDS-related policies for their states. 



205 



Title II Programs 

The Ryan White Comprehensive AIDS Resource Emergency (CARE) Act 
became law in August, 1990 with the objective to improve both the quality and 
availability of care for people with HIV disease and their families. Title II of the CARE 
Act allows states to allocate funds among any or all of four areas: to cover home- 
based health services; to provide medication and other treatments; to continue private 
health insurance coverage; or to fund HIV care consortia. 

Title II Funding Allocations. The study presents how the states are allocating 
Title II funds, with most states spending the largest share of Title 11 funds on HIV 
consortia.^ Among the programs and services that Title II administrators considered 
to be most effective at meeting the care needs of people living with HIV are: the HIV 
consortia; the HIV/AIDS DAPs; case management; and various home health services. 
The Title II administrators in most states expect the number of Title II beneficiaries to 
increase. If federal funding for Title II programs does not increase to keep pace with 
the increasing number of people expected to receive Title II benefits, then the Title II 
programs may not be able to provide services for all eligible people. 

Consortia. The study identified a range of medical and support services that 
the HIV consortia funded by Title II provided during 1995 in the various states. Among 
the most effective consortia services identified by the study are: case management, 
primary medical care, drugs/medication, dental care, and home care. However, as 
the response from a Title II administrator in Florida summarized: "a single service 

* The Title II surveys were completed before the approval by the Food and Drug 
Administration of the protease inhibitors. The expense of these new drugs, when used 
in combination therapies, may change this allocation of funding among Title II 
programs. 

206 



cannot be identified as [most effective]. It is the continuum of care that makes Title II 
effective - the broad array of services covered [in Florida]." The services identified in 
Table 2-3 in the Final Report of this study offer examples of the broad array of medical 
and support services that comprise the continuum of care needed by people with HIV 
illness to guide the HIV consortia funded by Title II. 

The study also identified the medical and financial criteria necessary for 
individuals to become eligible for HIV consortia services. The study documents that 
the state Title II programs have established generous income eligibility standards for 
services provided by HIV consortia, especially when compared to Medicaid eligibility 
standards. Hence, HIV consortia funded by Title II can provide services to people 
infected with HIV who have incomes too high to become eligible for Medicaid 
coverage. 

To coordinate HIV consortia programs with the state Medicaid programs, 
Medicaid representaitives serve on Title II boards and committees in a number of 
states. In addition, case managers can assist individuals who have HIV disease with 
the Medicaid eligibility process. This role for case managers is important because a 
number of state AIDS program directors identified the Medicaid eligibility/application 
process as a barrier to the coordination of Medicaid with the Title II programs. 
Another barrier to Medicaid/Title II integration and coordination mentioned by AIDS 
program directors in a number of states is the administrative separation of the two 
programs in different state agencies. Coordinated meetings and cross-training 
programs can help overcome the integration problems created by this separate 
administration of the Medicaid and Title II programs. 



207 



Generous eligibility criteria and coverage of a broad array of medical and 
support services by HIV consortia allow these Title 11 programs to strengthen the 
public-sector safety net for financing the care needed by people with HIV-related 
illness. HIV consortia funded by Title II provide needed care to people with HIV 
disease before they become eligible for Medicaid or Medicare.'' 

HIV/AIDS Drug Assistance Programs. Most Title ll-funded DAPs had 
formularies, with the number of drugs included ranging as high as 191 medications in 
New York during 1995. The decision to add new drugs to the DAP formulary is made 
by a board, panel, or committee in most states, with a number of states noting that the 
cost of medications or the availability of funds affects these decisions. Although It 
would allow health providers to prescribe the most appropriate drug therapies, the 
DAPs in some states do not allow the off-label use of medications. 

The study also identified the medical and financial criteria necessary for 
individuals to become eligible for DAPs. The study documents that the state Title II 
programs have established generous income eligibility standards for services provided 
by DAPs, especially when compared to Medicaid eligibility standards. Hence, DAPs 
funded by Title II can provide drug therapies to people infected with HIV who have 
incomes too high to become eligible for Medicaid coverage. 



^ For a person with HIV illness to become eligible for Medicare requires meeting 
eligibility criteria for Social Security Disability Insurance (SSDI), including 
disability status, sufficient work-related history, and a 29-month waiting period (5 
months from disability status for SSDI payment to begin, then 24 additional 
months for Medicare coverage to begin). (See Bally, M., Bilheimer, L, 
Woolridge, J., Langweil, K., and Greenberg, W. "Economic Consequences for 
Medicaid of Human Immunodeficiency Virus Infection." Health Care Financing 
Review (1990 Annual Supplement): 97-108. 

208 



DAPs funded by Title II in a number of states cover the prescription drug needs 
of Medicaid recipients with HIV or AIDS in excess of the Medicaid limits implemented 
in these states. However, the DAP in South Carolina responded that due to the lack 
of funds it can no longer cover the drugs needed by Medicaid recipients with HIV or 
AIDS that exceed the drug utilization limits implemented by the Medicaid programs in 
that state. DAPs also can provide drug coverage to people with AIDS or HIV who are 
in the process of becoming eligible for Medicaid benefits. 

DAPs in a number of states reported the use of waiting lists. Given the 
encouraging results of the new protease inhibitors in treating HIV infection, and the 
$12,000 to $15,000 annual cost of these and other drugs per person when used in a 
combination therapy or a "three-drug cocktail", the DAPs funded by Title II will face 
increasing fiscal pressures (Altman, 1996; Winslow, 1996). In fact, some states are 
already tightening eligibility, reducing the number of covered drugs, or implementing 
copayments (McGinley, 1996). If federal funding for Title 11 programs in the future 
does not keep pace with the expected increase in the number of people eligible for 
Title II services, and the costs of services provided, then the public-sector safety net 
for financing HIV-related care will be weakened. 

Home and Community-Based Care. The study identified a range of home 
and community-based care services funded by Title II in various states during 1995. 
Among the most effective services identified by the study are: case management, 
personal/attendant care, homemaker/chore services, home I.V. therapy, and 
transportation. 

Coordination of the Title II programs with the Medicaid Home and Community- 
Based Care Waiver programs will increase the range of services available to people 

209 



with AIDS and HIV infection while conserving limited Title II resources. Contracting 
with Medicaid-certified providers of home and community-based services will allow the 
Title II programs to promote the continuity of care as patients become eligible for 
Medicaid, as well as help assure that Title II is the payer of last resort. 

Health Insurance Continuation Programs. In all states implementing the 
health insurance continuation program with Title II funds, the programs cover health 
insurance premiums, with a few states also covering copayments, coinsurance, and/or 
deductibles. The study documents that the state Title II programs have established 
generous income eligibility standards for assistance provided by the health insurance 
continuation programs. Hence, the health insurance continuation programs funded by 
Title II can provide coverage to people infected with HIV who have incomes too high 
to become eligible for Medicaid coverage. 

Title II Summary. Generous eligibility criteria and coverage of a broad array of 
health services by the programs funded by Title 11 of the CARE Act strengthens the 
public-sector safety net for financing the care needed by people with HIV-related 
illness. Title II programs provide needed care to people with HIV disease before they 
become eligible for Medicaid or Medicare. Generous eligibility criteria (or no income 
restrictions in some states), however, can become a double-edged sword. If federal 
funding for Title II programs is not sufficiently increased to keep up with the increasing 
number of people expected to receive benefits from Title 11 programs, or if future 
federal Medicaid reform allows the states to establish even more restrictive Medicaid 
eligibility standards, then the Title II programs may not be able to provide services for 
all eligible people. This could result in the use of waiting lists, reduced services, some 
other forms of rationing, or the implementation of more restrictive eligibility criteria. For 

210 



example, the DAPs funded by Title II of the CARE Act in a number of states have 
implemented waiting lists for people to receive medications because funding is not 
adequate to meet the need for this coverage. If federal funding for Title II programs in 
the future does not keep pace with the expected increase in the number of people 
eligible for Title II services, then the public-sector safety net for financing HIV-related 
care will be weakened. 

Medicaid Home and Community-Based Care Waivers 

The Medicaid Home and Community-Based Care Waiver programs allow the 
states considerable flexibility in defining the groups of people to be served and the 
range of services to provide. These waivers allow the states to implement innovative 
programs to provide community-based, long-term care to people with AIDS. Given 
their disability status, people with AIDS who meet the more generous eligibility 
standards established for these waiver programs may receive services from the 
Medicaid Home and Community-Based Care waiver programs for the Elderly and 
Disabled or from a separate waiver for the Disabled (Buchanan, 1996).*^ In addition, 
15 states and the District of Columbia (implemented in December, 1996) have 
established AIDS-specific Medicaid Home and Community-Based Care waiver 
programs and Maine expects to implement this AIDS-specific waiver during 1997. 

Case management services are advocated as critical to the care of people with 
AIDS, with the role of the case manager extending beyond the coordination of health 
services to include helping people with AIDS cope with their social and emotional 
needs. As Tables 6-1 , 6-3, and 6-5 in the Final Report for this project demonstrate. 

These waiver programs for the disabled, however, are limited in many states to 
the developmentally disabled. 

211 



the Medicaid Home and Community-Based Care waiver programs for people witii 
AIDS, the Elderly and Disabled, and for the Disabled offer case management services 
in most states. Case management was identified by Medicaid administrators in the 
survey conducted for this research as among the most effective waiver services 
provided to people with AIDS. Other services provided by these waiver programs that 
the Medicaid administrators identified as most effective at meeting the care needs of 
people with AIDS are: personal care, homemaker services, assistive technologies, 
emergency response, medical social services, in-home and inpatient respite care, 
counseling, home intravenous therapy, nutritional counseling and supplements, 
attendant care, hospice care, home-delivered meals, and unlimited prescription drug 
coverage. (See Tables 6-2, 6-4, and 6-6 in the Final Report.) State Medicaid 
programs not administering the AIDS-specific waiver program can include these 
services in their waiver programs for the elderly and disabled. Since people with AIDS 
are typically eligible for these waiver programs due to their disability status, even states 
without the AIDS-specific waiver can then offer Medicaid recipients with AIDS a broad 
range of needed home care and community-based services. 
State-Funded Medical Assistance Programs 

A number of states implement state-funded MAPs to provide health care to low- 
income people. However, a review of the literature revealed no published papers that 
describe these programs. A two-step survey process was used to identify states that 
implemented state-funded MAPs during 1997 and to collect data describing eligibility, 
coverage, and payment policies for these programs. 

Typically, requirements for MAP eligibility are restrictive but the range of health 
services covered tends to be comprehensive in most states. MAP payment levels for 

212 



the health services included in the study typically are less than the Medicaid payment 
level, which may make it difficult for MAP beneficiaries to gain access to these 
services. In spite of these eligibility and payment level restrictions, these state-funded 
MAPs can provide health coverage to people with HIV disease who lack other health 
insurance. As Table 7-2 in the Final Report illustrates, most of these state-funded 
MAPs cover a comprehensive range of health services needed by people infected with 
HIV, including acute care services and prescription drugs, as well as necessary home 
and community-based care and support services. 
AIDS Service Organizations 

Public programs are the primary payers for the health and care-related services 
provided to people with HIV. The coverage, payment, and utilization policies 
implemented by these public programs affect the care that people with HIV receive. 
ASOs were surveyed to identify effective services covered, and effective services that 
are not covered, by these public payers of HIV-related care, as well as to identify 
problems that people with HIV illness have with these programs. 

As Table 8-1 in the Final Report illustrates, the state Medicaid programs cover a 
range of health services that meet the needs of people with HIV, with prescription drug 
coverage mentioned most frequently by the ASOs. However, a number of states place 
restrictive utilization limits on these health services (for example, three prescriptions 
per month), often below the levels needed by people with HIV illness. Table 8-1 in the 
Final Report also presents effective health and care-related services that the state 
Medicaid programs do not cover. All of these services can be provided with the 
Medicaid home and community-based care waiver programs for people with AIDS/HIV 
and for the elderly and disabled (people with AIDS can access this programs due to 

213 



their disability status). Expanded use of these waiver programs would allow the state 
Medicaid programs to target eifective health and care-related services to people with 
HIV illness. In addition, due to more generous income eligibility standards, it is easier 
for people with HIV to qualify for these waiver services than for traditional Medicaid 
coverage (Buchanan, 1996). 

Table 8-2 in the Final Report presents effective health and care-related services 
provided to people with HIV that are funded by Title il of the Ryan White CARE Act. In 
addition to prescription drugs and physician services, the Title II programs offer 
support-related services such as food and nutrition, transportation, alternative 
therapies, mental health and support groups, adult and child day care, and legal 
services. Limited funding for Title II programs was the problem most frequently 
identified by the ASOs. A number of ASOs also mentioned a lack of awareness of 
Title II programs as a problem for people with HIV illness. 

As Table 8-3 in the Final Report summarizes, the ASOs identified a blend of 
both health care and social services funded by Title I of the Ryan White CARE Act as 
most effective at meeting the needs of people with HIV illness. One ASO responded 
that the Title I program in its service area does not cover support services for family 
and friends of people with HIV disease, with these people feeling "left out." Another 
ASO reported the lack of transportation to care results in the loss of care. 

As Table 8-4 in the Final Report presents, the Medicare program covers a range 
of health services necessary for the treatment of acute illness, except for prescription 
drugs. Given the success of the combination drug therapies in combatting the 
progression of HIV disease, the ASOs identified the lack of Medicare coverage of 
prescription drugs as a major problem for people with HIV illness. One ASO 

214 



responded that if Medicare was "the only health insurance a disabled person has, lack 
of access to medications is a significant problem." Another ASO noted that given the 
focus of Medicare coverage on acute care/medical care, the lack of Medicare 
coverage of support services is a problem for people with HIV disease. The length of 
time for Medicare eligibility (29 months) is a severe problem for people with HIV illness. 
Medicare cost sharing responsibilities can be more than most people with AIDS can 
afford. 

One ASO responded that the Title II programs need to address the concerns of 
people who may recover from HIV-related disability with job and re-education 
programs. Given the success of the combination drug therapies in combatting the 
progression of HIV disease, all public programs covering HIV-related care, not just the 
CARE Act programs, will need to address the health and care-related needs of people 
who recover from HIV-related disability. If people recover from HIV-related disability, 
will they lose their disability status? This disability status, for example, is a key element 
of eligibility for Medicaid coverage. Without this coverage, will they still have access to 
the combination drug therapies and other health and care-related services that led to 
their recovery? The eligibility of people who recover from HIV-related disability for 
public programs will become an increasingly important issue in the near future as new 
developments in drug therapies and other treatments combat the progression of HIV 
disease. 

Tuberculosis Control Policies 

Incentives and Enablers for Compliance with TB Drug Regimens. The 

results of the survey conducted for this study indicate that public health departments 
in almost all states are implementing the incentives and enablers that TB experts 

215 



advocate to encourage patients to comply with drug regimens in efforts to control this 
disease. The implementation of these TB incentives, along with public health 
screening and treatment programs combined with dramatically increased federal 
funding for TB control during federal fiscal year 1993, may help to explain why the 
incidence of TB resumed its long term decline in the United States in 1993 after a 
decade of resurgence. 

Public Programs to Fund Treatment Services. Aggravating and enhancing 
the threat of TB in the United States has been the emergence of AIDS. The spread of 
TB among people with AIDS has important public health consequences because TB 
may be the only AIDS-related disease that can be transmitted to people who are not 
infected with HIV (Hopewell, 1992). With the increasing incidence of AIDS in the 
United States, public health programs must be maintained and expanded to control TB 
to protect the public health and the health of people with AIDS. 

Based on the results observed in New York City and other areas, DOT 
programs have been successful in the control and treatment of TB. Similarly, nursing 
case management offers a comprehensive approach to TB treatment, assigning 
outreach workers, initiating DOT, and assisting the TB patient with any necessary 
services to ensure compliance with therapy. According to the responses to the survey 
conducted for this study, public health departments in all states reported the use of 
DOT programs and most states utilized nursing case management. 

The increased use of nursing case management, TB outreach workers, and 
DOT programs to treat and control TB may require increased public health 
expenditures during the short term in a political environment of contracting public 
resources. However, each dollar spent on TB control programs produces savings of 

216 



three to four dollars in averted TB treatment costs, with even greater savings produced 
by controlling multi-drug resistant TB Institute of Medicine, 1992). Hence, nursing 
case management, DOT, outreach workers and other TB control efforts are highly 
cost/effective (Frieden, et al., 1995). 

Evaluating TB patients for eligibility for Medicaid, Medicare, and the Ryan White 
programs can provide resources to care for people with TB. The home and 
community-based care programs funded by Medicaid and by Title II of the CARE Act 
can be especially helpful to public health departments in the fight against TB, covering 
case managers, outreach workers, and the health professionals for DOT programs 
provided to eligible people with TB. 

The results of the survey conducted for this study indicate that public health 
departments in almost all states are implementing the programs and policies that TB 
experts advocate to control this disease. The resurgence of TB in the United States 
during the 1980s, however, illustrates that the danger of TB to the nation's health is a 
constant threat. Utilizing Medicaid, Medicare, and the programs funded by the Ryan 
White CARE Act can provide additional resources to fund case management, directly 
observed therapy, outreach programs, and other services that are effective at 
combatting TB among people with HIV infection. 

Policy Implications 

This study creates a state-by-state archive of state-administered health 
programs available to people with HIV. These data help identify any holes in the 
public-sector safety net of health coverage for people with HIV-related conditions and 
identify other state-administered programs that help close these gaps in coverage. 
Successful innovations developed by individual states that develop a comprehensive 

217 



range of state-administered programs can serve as models to guide other states in 
developing AIDS-related policies that assure all people with HIV have access to 
necessary social and health services. 

Conclusions 

Given the success of the combination drug therapies in combatting the 
progression of HIV disease, all public programs covering HIV-related care will need to 
address the health and care-related needs of people who recover from HIV-related 
disability. If people recover from HIV-related disability, will they lose their disability 
status? This disability status, for example, is a key element of eligibility for Medicaid 
coverage. Without this coverage, will they still have access to the combination drug 
therapies and other health and care-related services that led to their recovery? The 
eligibility of people who recover from HIV-related disability for public programs will 
become an increasingly important issue in the near future as new developments in 
drug therapies and other treatments combat the progression of HIV disease. The 
recovery from HIV-related disability and adequate funding for public programs to 
provide health coverage to people with HIV are among the most important HIV-related 
issues in future public policy debates. 



218 



References 



Altman, L. "Scientists Display Substantial Gains in AIDS Treatment." The New York 
Times . July 12, 1996, pp. 1, A9. 

Buchanan, R. "Medicaid Eligibility Policies for People with AIDS." Social Work in Health 
Care . 1996; 23: 15-41. 

Frieden, Fujiwara, Washko, and Hamburg. 'Tuberculosis in New York City, Turning the 
Tide." The New England Journal of Medicine . 1995; 333: 229-233. 

Hopewell, P. "Impact of Human Immunodeficiency Virus Infection on the 

Epidemiology, Clinical Features, Management, and Control of Tuberculosis." 
Clinical Infectious Disease . 1992; 15: 540-547. 

Institute of Medicine. Emerging Infections: Microbial Threats and Health in the United 
States , eds. J. Lederberg, R.E. Shope, and S.C. Oaks, jr. (Washington, D.C.: 
National Academy Press, 1992). 

McGinley, L "States Move to Ration Promising AIDS Drugs." The Wall Street Journal . 
August 22, 1996, pp. B1, 86. 

Winslow, R. Health Insurers and HMOs Say They'll Pay for New AIDS Drugs." The Wall 
Street Journal . July 12, 1996, pp. A3, A6. 



219 



ACKNOWLEDGMENTS: 

This project was funded by the Health Care Financing Administration of the U.S. 
Department of Health and Human Services (grant # 18-P-90286/5-02). I thank 
Michael Kendix, Ph.D., the HCFA Project Officer, for his attention to my requests 
concerning the research and implementation of the study. In addition, I thank Marilyn 
Lewis-Taylor, the HCFA Grants Management Specialist, for her attention to my 
requests concerning budgetary issues. Their cooperation made this study a more 
manageable project. 

Although too numerous to mention individually, I also thank the people at the 
various programs funded by Title II of the Ryan White CARE Act, the state Medicaid 
programs, the state-funded medical assistance programs, and the tuberculosis control 
programs and the state health departments who had the interest and took the time to 
complete the questionnaires. In addition staff at the National Association of People 
with AIDS helped identify the state and local AIDS service organizations which 
participated in this study. Without the assistance of all these individuals and 
organizations, this study would not have been possible. 



220 



Appendix 1: 
List of Publications Resulting From the Study 

Published: 

R.J. Buchanan. 'Tuberculosis and HIV Infection: Utilization of Public Programs to 
Fund Treatment Services," AIDS AND PUBLIC POLICY JOURNAL, Vol. 12, No. 
4, 1997, forthcoming. 

R.J. Buchanan and B. Chakravorty. 'The Medicaid Home and Community-Based Care 
Waiver Programs: Providing Services to People with AIDS," HEALTH CARE 
FINANCING REVIEW, Vol. 18, No. 4, 1997. 

R.J. Buchanan. "The Ryan White CARE Act: The States' Allocation of Title II Funding 
Among Programs," AIDS AND PUBLIC POLICY JOURNAL, Vol 12, No. 3, 1997. 

R.J. Buchanan. "Compliance with TB Drug Regimens: Incentives and Enablers 
Offered by Public Health Departments," AMERICAN JOURNAL OF PUBLIC 
HEALTH, Vol. 87, No. 12, 1997. 

R.J. Buchanan. "Health Insurance Continuation Programs Funded by Title II of the 
Ryan White CARE Act: A Survey of the States," AIDS AND PUBLIC POLICY 
JOURNAL, Vol. 12, No. 2, 1997. 

R.J. Buchanan. "Home and Community-Based Care Funded by Title II of the Ryan 
White CARE Act: A Survey of the States," AIDS AND PUBLIC POLICY 
JOURNAL, Vol. 12, No. 1, 1997. 

R.J. Buchanan and S.R. Smith. "Drug Assistance Programs Funded by Title II of the 
Ryan White CARE Act: A Survey of the States," AIDS AND PUBLIC POLICY 
JOURNAL, Vol. 11, No. 4, 1996. 

R.J. Buchanan. "Consortia Services Funded by Title II of the Ryan White CARE Act: 
A Survey of the States," AIDS AND PUBLIC POLICY JOURNAL, Vol. 11, No. 3, 
1996. 

Under Publication Review: 

R.J. Buchanan. "State-Funded Medical Assistance Programs: Sources of Health 
Coverage for People with HIV Illness." 

R.J. Buchanan and B. Chakravorty. "Assessments of the Coverage of HIV-Related 
Care by Public Programs: A Survey of AIDS Service Organizations." 

Please do not quote or distribute data from the two articles under publication review. 
Please contact the principal investigator for publication developments, or for citation 
suggestions, concerning the chapters under publication review. 



221 



Appendix 2 
Table 6-7 

Expenditures for Services Provided to Waiver Recipients at the Acute Level 
with the AlOS-Speciric, Home & Community-Based Care Waivers 
(Annual Report on Home and Community-Based Services Waivers) 





Average Per Capita Expenditures for Institutional Services 
Provided to Acute-Level Recipients: 


Average Per Capita Expenditures for Acute Care 
Services Provided to Acute-Level Institutional Sendees Recipients: 


Non-waiver 
Recipients 


Waiver 
Recipients 


Non-waiver 
Recipients 


Waiver 
Recipients 


California 
(initial report) 


$10,386 

(1/1/92 - 


$8,768 

12A31/92) 


$884 

(1/1/92 - 


$1,654 

12A31/92) 


Colorado 
(initial report) 


$10,430 1 $8,606 
(1/1/95-12/31/95) 


$951 1 $1,261 
(1/1/95-12/31/95) 


Delaware 


not available 


not available 


not available 


not available 


Florida 
(lag report) 


$16,568 

(1/1/92 - 


$13,723 

12A31/92) 


$5,601 

(1/1/92 - 


$1,841 

12/31/92) 


Hawaii 
Oag report) 


$30,699 1 $20,755 
(6/01/92 - 05/31/93) 


$10,222 1 $8,860 
(6/01/92 - 05/31/93) 


Illinois 
(lag report) 


$32,391 1 $37,475 
(10/01/92 - 09/30/93) 


$4,725 1 $3,756 
(10/01/92-09/30/93) 


Iowa 

(initial report) 


$1,419 1 not applicable 
(07/01/93 - 06/30/94) 


$1,343 1 not applicable 
(07/01/93 - 06/30/94) 


Maine 


Maine expects to implement an AIDS-specific waiver during 1997 


Maryland 


Maryland does not have an AIDS-specific, Medicaid Home and Community-Based Waiver, but implements the 
program "HIV Targeted Case Management Services". (See Table 5) This program served 760 people during 1994. 


Missouri 
(lag report) 


$9,122/98 
7/01/93-6/30/94 


$14,157.55 
7/01/93-6/30/94 


$6,157.75 
7/01/93-6/30/94 


$4,472.58 
7/01/93-6/30/94 


New Jersey 


HCFA372 


Lag Report not available at the time 


> of the survey due to a change in fis 


>cal agents 


New Mexico 
(initial report) 


$11,777 

(07/01/91 


$7,907 

- 06/30/92) 


$1,686 

(07/01/91 


$1,469 

- 06/30/92) 


North Carolina 


North Carolina will ir 


nplement an AIDS-specific, Medicai 


d Home and Community-Based Wai 


ver effective 1 1/1/95 


Pennsylvania 
(initial report) 


not available 

(04/01/93 


not available 

-03/31/94) 


not available 

(04/01/93 


not available 

- 03/31/94) 


South Carolina 
(initial report) 


not applicable | not applicable 
(10/01/93 - 09/30/94) 


not applicable | not applicable 
(10/01/93 - 09/30/94) 


Virginia 


not available 


not available 


not available 


not available 


Washington 
(lag report) 


$15,871 

(07/01/92 


$12,349 

-06/30/93) 


$8,748 

(07/01/92 


$11,241 

- 06/30/93) 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of the state Medicaid programs. This research 
was funded by a grant from the Health Care Financing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



222 



Appendix 2 
Table 6-8 

Expenditures for Services Provided to Waiver Recipients at the Nursing Facility Level 
with the AIDS-Specific, Home & Community-Based Care Waivers 
(Annual Report on Home and Community-Based Services Waivers) 





Average Per Capita Expenditures for 
Institutional Services Provided to NF-Level Recipients: 


Average Per Capita Expenditures for Acute Care Services 
Provided to NF-Level Institutional Sennces Recipients: 


Non-waiver 
Recipients 


Waiver 
Recipients 


Norv-waiver 
Recipients 


Waiver 
Recipients 


California 
(initial report) 


$4,599 
(SNF level) 

(1/1/92 - 


$6,189 
(SNF level) 

12/31/92) 


$1,117 
(SNF level) 

(1/1/92 - 


$1,670 
(SNF leveO 

12/31/92) 


Colorado 
(initial report) 


$16,193 
(NF level) 

(1/1/95- 


$8,286 
(NF leveO 

12/31/95) 


$4,962 
(NF level) 

(1/1/95 - 


$3,263 
(NFIeveO 

12/31/95) 


Delaware 


not available 


not available 


not available 


not available 


Florida 
(lag report) 


$15,493 
(NF level) 

(1/1/92 - 


$11,878 
(NF level) 

12)31/92) 


$5,080 
(NF level) 

(1/1/92 - 


$1,096 
(NF leveO 

12/31/92) 


Hawaii 
(lag report) 


not applicable 

(6/01/92 - 


not applicable 

05/31/93) 


not applicable 

(6/01/92 - 


not applicable 

05/31/93) 


Illinois 
(lag report) 


not applicable 
(NF level) 

(10/01/92 


not applicable 
(NF level) 

-09/30/93) 


not applicable 
(NF level) 

(10/01/92 


not applicable 
(NF level) 

- 09/30/93) 


Iowa 

(initial report) 


not applicable 
(SNF level) 

(07/01/93 


not applicable 
(SNF level) 

-06A30/94) 


$1,525 
(SNF level) 

(07/01/93 


$17 
(SNF level) 

-06/30/94) 


Maine 


Maine expects to implement an AIDS-specific waiver during 1997 


Maryland 


Maryland does not have an AIDS-specific, Medicaid Home and Community-Based Waiver, but implements the 
program "HIV Targeted Case Management Services". (See Table 5) This program served 760 people during 1994. 


Missouri 
(lag report) 


not applicable 

(NF leveO 
7/01/93-6/30/94 


not applicable 
(NF level) 
7/01/93-6/30/94 


not applicable 
(NF level) 
7/01/93-6/30/94 


not applicable 

(NF level) 
7/01/93-6/30/94 


New Jersey 


HCFA 372 


Lag Report not available at the time 


i of the survey due to a change in fis 


>cal agents 


New Mexico 
(initial report) 


not applicable 
(NF level) 

(07/01/91 


not applicable 
(NF level) 

- 06/30/92) 


not applicable 
(NF level) 

(07/01/91 


not applicable 
(NF level) 

- 06/30/92) 


North Carolina 


North Carolina will it 


Tiplement an AIDS-specific, Medical 


d Home and Community-Based Wa 


ver effective 1 1/1/95 


Pennsylvania 
(initial report) 


not available 

(04/01/93 


not available 

- 03/31/94) 


not available 

(04/01/93 


not available 

-03A31/94) 


South Carolina 
(initial report) 


$9,456 
(NF level) 

(10/01/93 


not applicable 
(NF level) 

-09/30/94) 


$2,391 
(NF level) 

(10/01/93 


not applicable 
(NF level) 

- 09/30/94) 


Virginia 


not available 


not available 


not available 


not available 


Washington 
(lag report) 


not applicable 
(NF level) 

(07/01/92 


not applicable 
(NF level) 

- 06/30/93) 


not applicable 
(NF level) 

(07/01/92 


not applicable 
(NF level) 

-06A30/93) 


Source: Robert J. Buchanan, Ph.D., Department of Community Health, University of Illinois, a 1995 survey of the state Medicaid programs. This research 
was funded by a grant from the Health Care Rnancing Administration, U.S. Department of Health and Human Services (grant # 18-P-90286/5-01). 



223